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Gains and Losses / 22 September 2015

Loss. Loss of function, loss of independence, loss of control and perhaps loss of life is often associated with disability. Over the last week or so this was brought sharply into focus in relation to the proposed Assisted Dying Bill. 

I have the genetic muscle wasting condition, Spinal Muscular Atrophy that would put me into the bracket of perhaps not having more than six months to live.  Indeed my parents were told that, at age two, my life expectancy was limited. I have always been rather rebellious so I’m delighted that I am now planning my 40th Birthday next month and proving there is no certainty in life. 

However the issues are complex and I was starkly reminded of this when discussing the rights and wrongs of the right to die with a good friend who had nursed her mother through a very painful death. She could only see the benefit of providing families with some way of helping to end the pain of their loved ones. We reached stalemate. I am afraid that my rights to life would ultimately be eroded and lost, and my friend terrified she may lose another loved one in that way again.

Choice is usually seen as positive, as a gain. However does in fact giving us more choice create a whole other set of dilemma’s that ultimately means we have much to lose? My arts practice centres on the intricacies of our genetic inheritance and the ever-increasing advances in genetic knowledge, which offer us more choice and more options.

This research and development project is also an opportunity for me to collaborate with the researcher Dr Felicity Boardman from the University of Warwick. She is currently undertaking the research project “Imagining Futures”, which explores the social and ethical implications associated with the expansion of genetic screening, focusing on the genetic condition Spinal Muscular Atrophy (SMA).

Developments in genetic medicine over the past 50 years have had a great impact on the number and nature of decisions to be made by prospective parents. Felicity is looking at the relationship between experiential knowledge of disability and pre-natal screening decisions.

We started to discuss the sorts of responses she has had to her survey asking those with experiential knowledge of the genetic condition SMA whether they would support pre-natal screening for the condition on a much wider scale. I had made an assumption that the response would be predominantly positive. This assumption was based on the knowledge that many of the parents who had babies with Type 1 SMA had been supporting the case for screening.

Their experience is very different to mine. They have the pain associated with the loss of a baby, who often dies before they get to a year old. Many of these parents do not believe it is right to allow a child to enter this world for such a short amount of time, particularly when their short life is spent predominantly in and out of hospital. Of course there is also the argument that all life is precious. But to complicate matters further, SMA types (I have Type 2) cannot be predetermined by the test. Part of the argument will be that in order to stop the pain of loss for those who have the experience of Type 1, that it is justified to lose people like me. I’d just be collateral damage.   

As our discussions progressed it became clear that the survey was actually confirming the nature of the complexities of the argument and there were no clear winners in this debate.

Obviously I have my own perspective and experience. I believe I have gained so much directly as a result of my lived experience of disability and I am much the richer for it. I have had to think creatively, solve problems, be tenacious, be a good communicator, and develop empathy for others knowing life is seldom as it seems. 

Of course there are days when I wish my life would be easier, when I could pop to the loo like everyone else without careful planning etc. However, if I had the choice of gaining physical function but at the expense of potentially losing the essence of my identity I would reject that choice. 

My dilemma is that I wish my creative practice to explore the whole gamut of perspectives within this complex debate, not only my own viewpoint. I do not wish to make work that has to potential to lose the diversity of perspectives so my next choice will be how do I create a visual language that can give space to describe the losses and the gains.


Esther Gill

1 October 2015

Hi Esther, I too am glad that you are busy planning your 40th Birthday.

What I like about this piece is that you talk about the complexity of the issues around pre-natal screening and assisted dying. So often these things are presented in a simplistic, 'either/or' way, which doesn't necessarily reflect people's personal experience. I think it's also interesting to reflect on the way that technology and medical advances move on and put us in the situation of making choices for good or ill that previously we wouldn't have had to make. I look forward to seeing how you use visual art to reflect some of this.