Survivors: Life Unfiltered by Maddy Warren

Maddy Warren, Co-Creator talks about Survivors: Life Unfiltered 

“So now you have had your dialysis treatment are you better?”

“You don’t look ill”

“Why can’t you just skip dialysis so you can come away with us?”

There is a widely held sense of frustration within the kidney community about the breadth of misunderstanding and misconception around kidney disease. For a condition that is incurable and rapidly increasing worldwide, awareness is remarkably low. In the UK alone, approximately 3 million people have Chronic Kidney Disease (CKD) and a further 1 million are believed to be undiagnosed as symptoms often don’t appear until very late stages before the kidneys fail completely.

An estimated 60,000 people die of CKD every year, more than several types of cancer.

From the point of view of public health, this is an obvious challenge as people don’t realise how important it is that they take care of and protect their kidneys, especially those with pre-existing conditions such as diabetes or high blood pressure. But for people already affected by CKD, who live on dialysis or with a transplant, every day can be a fight to be understood by family, friends, employers, teachers, the welfare system and even the healthcare system itself. Being told you look really well is a double edged sword when you are in fact immersed in a constant juggling act, handling a life limiting condition and an array of symptoms in a body that you cannot trust or rely on to keep you alive without intervention.

In my two decades so far on dialysis, an era which has also been also filled with advocacy, campaigning and agitating, I have reached the conclusion that telling a story enriched with humanity and emotion is by far the most powerful way to convey a message that your listener will both care about and remember.

My belief is that by telling the engaging, thought provoking and deeply personal stories of people who live with kidney disease we can not only seek to improve broad awareness but also create a greater sense of shared experience within our own community, whilst perhaps also opening the eyes of those around us including those providing our care.

From this belief, and with a sense that a fresh perspective was needed, the idea for creating an exhibition was born out of a conversation in early 2019 between myself and Richard Booth, Creative Director and Photographer.

My passion for writing and interest in the power of storytelling to inspire and influence, aligns serendipitously with Richard's work creating engaging images intended to challenge perceptions and invoke emotion in the viewer. After all, a picture paints a thousand words.

We wanted to portray the strength, vulnerability and resilience of those who are affected by CKD, shining a light on some of the challenges they face as well as sharing powerful human stories that offer a unique perspective on the world. From Richard's point of view, learning about CKD surprised him as to how many hidden sides there are to this invisible condition, with significant mental health implications as well as the huge amounts of time that people have to pour into keeping themselves alive. Even if a transplant frees somebody from dialysis it is still just another treatment not a cure, and it can be far from the magic fix that people expect. 

“My priority above everything else is that I have a life and I’m not controlled by my condition. I constantly question my care and make sure that I am central to any decisions being made, I know my own body and my treatment better than anyone. Dialysis isn’t the end of the world - you need to become an expert, assert your own wishes and find the right option that works for you, but it doesn’t have to be a life sentence”

Brett Dowds, Survivors participant, on long term home dialysis.

We had an amazing response to our search for participants with over 80 kidney patients and their families coming forward. Our 34 “Survivors” are aged 2 to 78, since kidney disease does not discriminate. We have dancers, designers, teachers, parents, campaigners, artists, an ex-England professional footballer and many more.

Each person has been photographed on location in their own environment, sharing their outward facing daily lives and passions, living the best lives they can and embracing every moment. By contrasting each image with a second much starker studio shot, Richard sought to juxtapose the side that the world sees, with the less visible but significant burden and reality of living with this life limiting condition. The images are displayed as diptychs and we also have a collection of stories which are all unique, covering topics as diverse as facing mortality, mental health, body image, gratitude, survivor’s guilt, silver linings, reconciling with a “new” normal and finding hope.

We are very grateful to Quanta Dialysis Technologies, Kidney Care UK and Kidney Research UK for embracing the potential of this project as sponsors. Survivors is on show at gallery@oxo until 7 November 2021.

Richard Booth

Richard  is a globally renowned photographer who specialises in creating authentic, thought provoking imagery which can connect on an emotional level. He developed the idea for Survivors: Life Unfiltered by drawing on his extensive experiences using photography to influence the viewer, to challenge stereotypes, create a long lasting impact and to ideally engage with “non typical” audiences. Richard was commissioned as an official Olympic artist for London 2012 which culminated in the award winning book ‘Power and Movement – Portraits of Britain’s Paralympic athletes’. Giving an insight into the skill, poise and strength of Paralympic athletes, his evocative photography redefines traditional perceptions of disability, fitness and power.