When it comes to the ethics of identity and confession, theatrical performers and social researchers live in very different places. Over the last few months I have seen a lot of performance art. The kind of thing that often involves a lone performer and goes down big at the artsy end of the Edinburgh Fringe. It has been a huge amount of fun and an absolute revelation for somebody who, until now, thought their theatrical tastes only ran to Jacobean tragedy and classical pant-dropping farce.
Several of the performances are built around health themes and they include some uncomfortable personal and medical disclosures. One (By Ourselves) used folk music and slightly disturbing video to recreate the 19th century mental health journey of the poet John Clare. Another (Natasha Davis Teeth Show) elucidated the troubled migration and statelessness of the performer through a visually arresting exploration of her equally troubled oral health history. The chaos of post-’89 Europe artfully told as a quest for dentistry. Both are excellent and well worth the effort if you can get to a show.
I mention these two because, although one is about a named ‘patient’ and the other is an authentic, fact-based, recent first person narrative – neither would have had any particular trouble if they had to go in front of a health research ethical committee. One is about events which took place over a century ago and the other, although recent and personal, shows a sensitivity to protecting identities which all social researchers in health would instantly recognise.
Unlike the other two I want to tell you about.
‘Mental’ by the English political radical and theatrical performer known as ‘The Vacuum Cleaner’ is a shocking chronology of personality disorder, anti-capitalist activism and attempted suicide. It is patiently delivered by an extremely depressed, troubled and exquisitely charming young man who can’t and won’t get out from under his duvet. The tiny audience (limited to about 25) sit cross-legged around his bed in an almost painfully intimate encounter.
The calm, matter of fact story telling is illustrated, lecture style, with the overhead projection of old fashioned acetates. Many of these are real pages from the genuine and recent medical files of James, the performer. And repeatedly they show the written and signed observations and comments of the mental health professionals he has had dealings with. Dealings which include serious calibre medication, long term residential care and being sectioned under the Mental Health Act. There are blunt comments and shocking observations; there is some sensitivity but much lack of care and sympathy. The slides are real NHS documents with headed paper, names, addresses, dates, professional posts and signatures. And all of this lingers long and clearly on the OHP screen for the audience to peruse.
Tellingly, the NHS records and letters are given the same treatment as other documents extracted from James’s ‘anti-terrorism’ surveillance file, which he has somehow managed to legally wring from the grasp of the Metropolitan Police (at its most STASI-like). Although, as you might imagine, the Met’s ‘Forward Intelligence Team’ is somewhat more reticent than the NHS when it comes to putting their real names and signatures in the files!
I think it was something about the overheads that kept reminding me of my own activities in social health research. Because apart from being totally immersed in the Vacuum Cleaner’s tale, and several times close to tears, I kept on thinking: “If I put a slide up like that, I’d never work again!”
The ethical issues raised by ‘The Chop – How to Disappear completely’ lie in a different area. Itai Erdal is an ex-Israeli Canadian theatrical lighting designer with a gift for story-telling. His one man show includes haunting video interviews and beautiful lighting effects. It is moving, thought-provoking, funny and highly entertaining. And those last two are somewhat unexpected, seeing as the show is an observation (literally) of Itai’s participation in the ‘assisted’ bit of his mother’s assisted suicide. Quite possibly (indeed probably) the performance is telling a story that could lead to a police investigation and potential prosecution. The events in Itai and his mother’s story occur in Israel and seem to lie quite a way outside the limits laid down by that country’s 2005 ‘Dying Patient Law’.
As well as being hugely absorbed by the show and seriously amused by Itai’s various and brilliant narrative digressions, I again found myself wondering what would happen if a conference presentation in the scientific world contained this material. Would it be ‘acceptable’ for a social scientist to tell this story? To show a person with advancing cancer in a series of agonisingly close-up video interviews? And, above all, what would be the ethical limitations imposed on a commentary which included the open and frank discussion (and, indeed, disclosure) of the protagonists’ emotions, plans and actions.
Where the health research world merges into the ‘patient experience’ area (for example Oxford University’s healthtalk.org), some small steps into these areas can be found. But it is weak and sanitised stuff compared to the Vacuum Cleaner’s quiet but explosive disclosures or Itai Erdal’s fascinating sub-genre of theatre as confession.
When it comes to the ethics of identity and disclosure, theatrical performers and social researchers live in very different places. And that leaves me wondering – is that why the entertainers are so much more interesting, engaging and relevant than the social scientists?