This week is Learning Disability Week 2021 and today the theme is family. We asked the Chair of Board Pat Graham to write a reflective piece about the ‘Our Human Condition’ exhibition which features her daughters Lauren and Jenna.
PAMIS was very keen to support Paul Wenham-Clarke’s photography project, “Our Human Condition” because it tells the very personal stories of siblings in which one or more of them has a genetic condition. Not everyone with a PMLD has a genetic condition and not everyone with a genetic condition has a learning disability, but personal stories are very much at the heart of everything that PAMIS stands for. Particularly when they are the stories of people who are unable to speak for themselves.
One in 17 people in the UK will be affected by a rare disease at some point in their life; 80% of which will have a genetic cause. That represents around 3 million people which means that a genetic condition could affect any one of us, or our family members at any time. It’s a sobering thought.
As a family we were privileged to be part of this project. I am a family carer for my daughter, Lauren, who has a profound and multiple learning disability and complex epilepsy. Lauren’s big sister, Jenna, is an art teacher and illustrator. Families like ours are often perceived as “leading lives of quiet desperation” but actually the converse is often true. We have many close encounters with challenges, sadness and fear but we wouldn’t survive those difficulties without a zest for life, and the fortitude to discover joy and fun, however absurd, in any situation. Paul understands that people with genetic conditions not only have lives worth living but that they also have so much to offer that enhances our society.
As a family carer, I spend much of my time campaigning and trying to make Lauren’s voice heard, but I could talk until my throat was ragged, and not be able to have the same impact that Paul has created in the click of a shutter. The focus of this project was the relationships between siblings. My daughters could be portrayed as characters to be pitied but in fact Paul has captured something more elemental and fundamental: their humanity, their capacity to enjoy, their ability to communicate without words and their love for each other.
It was an absolute pleasure to work with and spend time with Paul. We had one of our best ever family days out being photographed in the garden and at the beach. Unbelievably, Pettycur Bay in Kinghorn looked like the Seychelles that day. The resulting photographs mean that others are able to see families like ours as we see ourselves and not as we may be perceived by the rest of the world. That is a precious gift and for that we are enormously grateful.
So far, the photographs of Jenna and Lauren have been displayed in two exhibitions; the first at the OXO Tower in London and the second in the Members’ Lobby at the Scottish Parliament. It was hoped that there would be a larger exhibition in the main lobby of the Scottish Parliament building but planning had to be postponed because of the Covid pandemic. I was incredibly proud to see my daughters photographed living their best lives and on show to the many people who cared to look, both in the centre of London and the heart of Edinburgh – not hidden away, but saying to people “look at us, we’re just like you.”
I attach an extract from Paul’s website” Our Human Condition” devoted to this particular project where you will find much more information and many more photographs of different families:
There are thought to be around 6000 genetic conditions, spread throughout the population, most of the time hidden in our genes, undetected. 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. 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.”
I wrote the poem “Going Home” about Lauren’s first few months in the COVID lockdown when we weren’t able to see Lauren and what she might have been thinking about the loss of her relationships with family and friends for what, to Lauren, would have been without any understandable explanation.