"I am not disabled by my genetic condition": Esther Fox on the Pandora's Box of screening for disability

Esther Fox interviewed by Anne Teahan | 29 April 2016

Artist Esther Fox on genetic screening, disability, her right to exist and Pandora’s Box - her forthcoming sculptural installation in the Science Museum’s ‘Who Am I?’ Gallery

a photo of a smiling young woman with long hair and bangs
Esther Fox's sculptural installation Pandora’s Box opens at The Science Museum’s Who Am I? Gallery in May 2016..
Of course I would be lying if I said my work wasn’t personal. I’ve been working with Researcher Dr Felicity Boardman of Warwick University, to explore the role of ‘experiential knowledge’ of disability in prenatal testing decisions.
Boardman’s research looked at the possibility of screening for the genetic condition SMA (Spinal Muscular Atrophy). If that becomes  policy, then 'people like me' will no longer be born - unless it’s by accident.

At art school, this theme started to emerge in my work. I was fascinated by tapestry weaving. The flaws and holes within woven structures became a mechanism for exploring ideas of imperfection which aligned with my interest in genetic screening. A little defect could be magnified, creating beautiful negative spaces within the images I created.

Disabled artists and medical ethics

In thinking about science and genetics, people may see disability as a medical problem to be solved by screening. But for many of us disabled artists, disability would be described from a 'social model' perspective where we’re not disabled by our medical condition but by the daily  barriers we face.

So although my muscles are generally weak - if I have a wheelchair and the facilities I need and can get around easily, then I am not actually disabled by my genetic condition.

Medicine may suggest that we all want to be cured, but maybe we don’t! Our experience of disability shapes our identities and we wouldn’t change that. What we would change are the barriers that prevent full participation in society.   

So I strongly believe there’s a specific role for disabled artists within the debate on medical ethics. Artists have always been the ones to tackle life’s emotive issues,  birth and death, love and hatred, pain and sorrow... Disabled artists have a unique voice to bring to this debate.

a photo of an artwork consisting of woven yellow threads across blocks mounted on a white wall
Esther Fox, Distance Not Applicable© Esther Fox
Capturing the experiential in art is so important. I worry about genetic screening - but throughout my research I have been keen to present different viewpoints. Everyone has a different take on genetic screening as they do about assisted suicide. There are multiple shades of grey in everything. If you’re too fervent in one particular view, there is a danger that your views could get sidelined.

But when writing blogs on Distinctive Not Alien I’ve been surprised how much reticence there is to discuss the subject. Perhaps people are frightened of being judged, or maybe they feel genetics isn’t relevant to them. I’ve been meeting with the Science Museum over the last few months to develop a new sculpture that will be displayed in their  ‘Who Am I gallery from May.

I was interested in a key statistic from their gallery evaluation, about the lack of public interest in the specifics of genetics. It was seen as a subject for the laboratory but not for society. I aim to fundamentally challenge that view and bring the human back into the science.

I am interested in bridging elements: between art and science, between fear and dialogue, between colour against the potentially dark traumatic issue.

A celebration

I had a touring exhibition A Series of Lines in collaboration with artist Craig Kerrecoe. We both explored genetics using contrasting approaches. He was not disabled but was concerned with ideas of heredity and what he would pass on to his sons. His work was dark and brooding. Mine has always been a celebration.

I like using colour in a tongue-in-cheek, gender specific way - with pinks and acid yellows reclaiming what might be seen as the predominantly male preserves of abstract painting, science and genetics.

But it is a tense balance - to enable dialogue and to make work that is aesthetically engaging. At the heart of it I’m still a visual artist and the work has to stand up within contemporary art.

a photo of a woman and two children pointing at artworks in a gallery
© Esther Fox
My latest piece, Pandora’s Box, is a departure from my painting and two dimensional work. Throughout my research I had been committed to depicting a range of differing opinions. However, Boardman’s final survey findings revealed a strong bias in favour of screening. I now feel it is more important to present my own clear perspective on the issue.

My Pandora’s Box will be made from lead and embossed with text exploring ancient philosophies about the value of life. The lead - a potentially toxic medium - will be gilded on the inside. A large double helix, made from computer punch tape (the original form of data collection storage for computers) will be spilling out of the box. Behind the box and printed on velum (a valuable parchment used for documents such as Magna Carta) will be excerpts of text taken from Boardman’s surveys on screening.

Screening to eradicate disability

The piece will explore my fear that the value of life has been reduced to a predominantly economic viewpoint; we are opening a Pandora’s Box of hugely complex problems for society that we have not fully grasped.

Once screening becomes commonplace we will not be able to return to a pre-screening time. It will become increasingly impossible for prospective parents to justify a position where they continue with pregnancies of disabled children.

Screening to eradicate disability makes no sense. Even if you’re given what is perceived to be a choice, there are still many things in life that you cannot plan for. There will always be disabled people living in our society, because humans are fragile; we break easily. So why don’t we concentrate on removing social barriers rather than removing the people?

Ultimately I hope the piece will encourage the public to question preconceptions about the value of disabled people’s lives and enable a more expansive idea about what it means to be human.

Esther Fox's Pandora's Box can be seen in the Science Museum's Who Am I gallery from May 12 2016.

What do you think? Leave a comment below.

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Fascinating, thoughtful, provocative and profound - 'Who am I' applies its question to the viewer as well as the artist - brilliant.
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