Powerful exhibition explores the lives of siblings affected by a genetic condition

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Jenna and Lauren. Lauren has an unidentified genetic condition that means she has a mental age similar to a baby (Picture: Paul Wenham Clarke)

Siblings can be oh so different, but their lives are always intertwined.

But what happens when one brother or sister is born with a genetic condition?

A new exhibition in Dorset, called Our Human Condition, explores this, taking an intimate look into the lives of siblings challenged by a genetic difference.

Professor Paul Wenham-Clarke spent two years meeting and photographing families across the UK to see how they live with varying degrees of disability, as well as exploring each person’s struggles, goals, and dreams.

The stories cover familiar conditions such as Down’s Syndrome to very rare conditions such as DOORs, which has only six cases in the UK.

Paul says: ‘There are thought to be around 6,000 genetic conditions, spread throughout the population, most of the time hidden in our genes, undetected.

Sisters Hattie and Charlotte (Picture: Paul Wenham Clarke)

‘This project explores the lives and relationships of siblings in which one or more has such a genetic condition. We learn how the siblings’ lives are different and yet deeply intertwined.

‘The human condition is defined as the positive or negative aspects of being human, such as birth, growth, reproduction, love and death. The people involved talk about how their relationship has worked and changed through their lives.

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‘The images and stories reveal how the families are very proud of who they are and their worth to wider society. They have a power to encourage empathy and promote humanity, as Jenna Graham says about her sister, “If more people spent time with someone like Lauren, the world would be a better place”.’

The resulting photos capture the touching bond between siblings such as Hattie, who has Down’s Syndrome, and her sister Charlotte.

When Hattie was being photographed she said she felt ‘rich and famous’. When her sister asked what she would buy if she really were rich and famous, Hattie responded: ‘A face like yours’.

Our Human Condition is being showcased from now until 19 January 2020, 11am to 6pm, at The Gallery@Oxo Tower, Wharf Bargehouse St, South Bank, London, SE1 9PH.

Hattie, who has Down’s Syndrome, said if she were rich and famous she would buy a face like her sister’s (Picture: Paul Wenham Clarke)

Sisters Precious and Favour. Precious has albinism. The girls are often told that they cannot be sisters. (Picture: Paul Wenham Clarke)

Sisters Maureen and Aileen: They are both in the 50s and Aileen has Down’s Syndrome. When their mother died Aileen’s hair felt out because of the stress of losing the closest person to her (Picture: Paul Wenham Clarke)

Brothers Rishabh and Kaustubh/ Rishabh had Down’s Syndrome and when they lived in India some friends and family told his parents he would grow out of it (Picture: Paul Wenham Clarke)

Sarah and her brother Sam. Sam has ATRX and they also have another brother called Dan. who also has ATRX. Sarah is one of their main carers and spends all her time with them and has put her own dreams of a family on hold. Sam sadly passed away a few months ago. (Picture: Paul Wenham Clarke)

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source https://metro.co.uk/2020/01/10/powerful-exhibition-explores-lives-siblings-affected-genetic-condition-12034201/