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The Thoughts and Views of Those Living with Genetic Diseases

William Mephan

Much emphasis is placed in medicine on treating illness and disease with medication. There are however numerous illnesses which cannot be alleviated by medical intervention for example many genetic disorders such Downs Syndrome or Huntington’s Disease. Through my artwork I wanted to explore how people living with genetic conditions may feel about their conditions so that I could in future improve my knowledge and abilities in a pastoral sense, not just a clinical sense.

In my artwork, a young girl is sitting on a swing but the swing is suspended in mid-air held, up by two DNA strands. This is a recreation of a piece of Banksy artwork situated in Bristol near Will’s Memorial Building however in the origin the swing is suspended by hearts. Putting my own spin on the Banksy artwork by changing the hearts for DNA strands helps to show how these individuals can often feel like their condition defines who they are and how they often feel as though they have very little to no resilience and no control over their lives. It wasn’t until I finished the piece that I fully realised the metaphor of the young girl was in black and white. Children are often considered much more resilient than adults due to their positive natures and ability to not take life too seriously – the girl is in black and white signifies that some people with these illnesses may think they have no control – but deep down they do – and there is always something that can be done to support their self-help mechanisms. This is represented by the fact that the girl is on the swing, and is a child.

In the picture the facial expression of the young girl is very solemn and negative, almost angry. This is to show that many people are angry about their diagnosis and can often develop resentful feelings. Some may come to intrinsically feel as though their illnesses define them and make them who they are. This of course is not true as there are many components of peoples’ personality and physical appearance that make them who they are, however, it is important to consider that many patients may have low self-esteem and poor mental health. This is represented in the drawing by the fact that the DNA strands are coloured however the girl is in black and white – signifying that people believe that their illnesses is often what people define them by, and that it is a major part of their identity. For some people who embrace their illnesses and work around them this can be a very empowering thing, however for many, it may cloud their view of themselves and the outside world.

It is important to note that my drawing is not a criticism of people who live with these illnesses – it is a form of empathy to show that perhaps we are trying to understand what they’re going through – listening closely to patients on my GP placement was very insightful. I also invite practitioners to consider how their patients are feeling, what societal assumptions they live with on a daily basis, and perhaps change their strategies of treatment to accommodate this. It was very interesting and to undertake this piece of artwork as it not only helped me to explore the perspectives of others but also examine my own in-depth.

Whole Person Care, Year One, 2017