Maybe We Can Build You A Smile That You Can Use In A Social Situation
Today I visited the Chris O’Brien Life Centre to attend the Sydney Facial Nerve Clinic. This clinic was set up by a group of surgeons and other medical professionals who decided to donate their time to create a monthly clinic for patients with complex facial nerve paralysis caused by various issues such as Bells Palsy, Cancer, accidents, etc.
It is a unique cross disciplinary clinic that provides an opportunity for a group of highly skilled doctors in various fields to contribute together on the care of a patient. Today they were truly creating a cross disciplinary clinic by inviting me, as a contemporary artist, to sit in on the examinations of patients, to observe and consider the experience of Facial Nerve Damage as a place where contemporary arts practice might have a role.
I was asked to give a presentation to the medicals staff before the clinic, at 8am. So I spoke to them for 30 minutes about my work. For years I have been talking about my belief that arts practice should exist within the sectors that make our world. That within Health, Education, Immigration, Environment and so on, there is a role to play for the artist. And as I stood in a room giving a presentation to our countries leading surgeons from various fields, I realise that this is quite remarkable, and real, that I am in fact standing here and contributing this thinking within this place of immense skill.
After my presentation I stayed for the duration of the clinic as patients were brought in one by one to be examined by the whole room, there were up to 15 people examining the patient at anyone one time. Before the patient was brought in, someone would read out the details of their case and then the patients and in most cases, a supportive family member, would be led into the room. They would sit in a chair and be examined by a lead surgeon, then everyone would asked questions, maybe other surgeons would get up and examine them.
Then the patient would be led outside while the medical staff all debated the condition, the treatment. Complex negotiations, differing opinions explored respectfully, determining potential treatment plans for these most advanced of cases. Then one doctor would be selected to go out and sit with the patient to discuss their options. While the next patients was brought in.
The complexity of facial nerve damage involves a strong emotional/psychological aspect, due to the facial paralysis. It was first described to me as working with “People who cannot express emotion on their face”. These patients talked about this causing them to socially isolate themselves and their loss of self-esteem.
“I just don’t try to smile anymore”
“If we fix this (pointing to eye) and that (pointing to mouth) then I am 70% a human being”
“I just want to be able to say my name properly”.
“I’m scared of my kids growing up and getting married, I am going to ruin their wedding photos.”
“I feel like people speak down to me because of my facial paralysis”.
The staff examined these patients, all with a great deal of care and concern.
“I’ve never had anyone ask me that before” tears “It’s quite nice".
It was fascinating to observe. The performativity of the encounter between doctor and patients, the technical language used between staff as they debated options, interjected by moments of poetic language
“Future proof the droop”
“Vectors of pull”
“Paradoxical raising of the eyebrow”
“Voluntarily poker facing”.
I spend the day observing. Understanding my arts practice in terms of “care” as spoken about by Maria Puig de la Bellacasa and Thom Van Dooreen:
As an affective state, caring is an embodied phenomenon, the product of intellectual and emotional competencies: to care is to be affected by another, to be emotionally at stake in them in some way. As an ethical obligation, to care is to become subject to another, to recognise an obligation to look after another. Finally, as a practical labour, caring requires more from us than abstract well wishing, it requires that we get involved in some concrete way, that we do something (wherever possible) to take care of another.