It is timely that as my R&D period draws to a close, the findings of Dr Felicity Boardman’s research looking at support for screening of SMA (my condition) are also published. http://www.smasupportuk.org.uk/sma-and-screening-the-views-of-families-the-imagining-futures-research
Through my discussions with artists, researchers and museum staff, some key themes have emerged. There are inherent challenges associated with choice when we are asked to make value judgments on human life from a predominantly clinical perspective. Also it seems that the current understanding of genetics is from a scientific standpoint and this has managed to create distance between the human and emotional. This has to some degree “switched off” the public to the issue, not seeing any urgent need for discussion, as generally genetics is not seen as having personal relevance for individuals other than an acknowledgement that our genes to some degree inform our identity.
It is also clear that there is a role for artists to play in the discussion about genetic screening and in particular, disabled artists. I interviewed three disabled arts practitioners, their full transcript will be used in my final report, but some key insights emerged:
“Perhaps a change of consciousness will come through art and culture first.. In mainstream culture we don’t really ask ‘what makes life worthwhile’ – not really, at least only in very shallow ways.”
“We want the Science to be rigorous and there’s a danger of trying too hard to make it warm and cuddly for mainstream consumption. So sophisticated and subtle and excellent art to act as a bridge is so important.”
“A disabled artist has deep knowledge of all the related issues – life, death, health, exclusion, the alternatives to received opinion, life on the edges, which can fuel powerful expression.”
“...I imagine there are a lot of stories to be shared that perhaps haven't been before. Presenting or agitating through art would allow the debate to be opened up, and give people facilitation and licence to talk.”
“Bringing the debate to life can only happen when there is a personal/emotional interest in the subject. The lived experience of a disabled person will bring knowledge, nuances and questions that are specific to living life as a disabled person;”
“Engaging through art often offers a buffer for discussing emotional issues. It opens the door to conversations that wouldn't otherwise happen.”
Dr Sue Porter
“For me the debate needs facilitation that takes it away from 'logical' discussion and the purely intellectual and returns the question, and the means of exploring it, to the body. Art can enable us to extend our epistemology, to explore ideas in a different and more relational way. Science can study what a body does, but art enables us to explore what a body is and what a body knows.”
“I think we can help to make the unspeakable speakable, help the gaze to rest longer in uncomfortable places and so shift the exploration and the debate from the knee jerk to the reflexive.”
In an interview with Damian Hebron, Director of London Arts in Health Forum he explored the strategic need for disabled artists to fully engage with this field.
“Ethicists, philosophers, artists and people with lived experience of the issues thrown up by genetic experience are rarely heard on the subject – making it feel like it is not an issue for society but one for the laboratory.”
“I think art is inherently challenging to the status quo and could re-set the focus of this debate away from norms which have emerged through a scientific orthodoxy of thought”
“…On sensitive ethical issues there is all the more reason for a fully diverse set of responses to be accessible so as to reflect the fullest range of thinking and insight into a subject and this should include disabled artists”
“…Historically the voice of disabled people has been downplayed and medicalised out of the conversation...Disabled artists are uniquely well placed to provide their own perspective, generate debate and input from other disabled people and to provoke and widen the discussion.”
My concern with trying to present a balanced view on the pros and cons of genetic screening has been somewhat shaken in the last few days in reading the final findings of Dr Felicity Boardman’s research survey of individuals and families with SMA. Although the qualitative data would suggest that those surveyed agreed that people with SMA (particularly type 2) could have fulfilling lives, when asked if they would support screening the majority (around 70%) still said yes. My worry is that my voice is now a quiet one. So rather than presenting all viewpoints, my work needs to reflect my particular perspective in order not to be drowned out. We are heading down a dangerous road where providing people with the option of screening may appear on first glance as a good thing – knowledge is power and why should we deny people choice? But what are we going to do with this knowledge and how will we justify our position if we want to continue with a pregnancy if a disabled child is deemed to be an economic drain on society? This may well be a Pandora’s box, that once opened we wish it had remained closed.