I am a chronically ill and invisibly disabled photographer. However my health isn’t something I talk about in my day to day life because I am concerned that it will impact my work in a negative way. I don’t want to be a “good disabled photographer”, I just want to be a “good photographer”. I don’t want a pity vote, or to be given any kind of special treatment and I don’t want clients to think they can’t approach me to work for them. I want my pictures to speak for themselves and succeed on their own merits.
Having said all that, there is no escaping the fact that my health massively impacts my photography. I was born with a genetic disease called Ehlers-Danlos syndrome. EDS is a defect of collagen and collagen is the glue which holds our bodies together. Consequently there is not a part of my body which works properly. I can dislocate my joints at will and live with chronic pain every day of my life. Our eyes are made of collagen and my vision is impacted by EDS. I’m sure you can imagine how frustrating it is to take photographs with eyes which look like this and how difficult it is to edit the pictures afterwards!
I will never be able to climb a mountain to take pictures of the stunning landscape where I live, or get down to photograph birds on the water at eye level. So I have to tailor my photography to my limitations. Ninety-five percent of my images are taken within a 5 mile radius of my house, as I find travel almost impossible, and virtually all of my people pictures are taken in the tiny spare bedroom of my cottage.
As if having EDS weren’t bad enough, when I was 26 and on holiday in Kenya I contracted meningitis and nearly died. I was extremely lucky to escape with my life intact but my immune system didn’t return to normal and I developed the disease M.E. (also wrongly known as Chronic Fatigue syndrome). I was bedridden for a decade, was so critically ill I again nearly died and was left with a mild brain injury.
Miraculously, however, after fourteen years I started to see some signs of improvement and am no longer totally bedridden but I do still have M.E. My body simply doesn’t produce energy properly and I have to spend a minimum of 17 hours of each day in bed, which is where all of my photographs are edited. This is my set-up: a Dell monitor on an over-the-bed table, my laptop balanced on my knee and a little Wacom tablet on the pillow next to me. It’s not ideal but I’ve done OK from underneath the duvet all things considered 😉.
I’ve decided to finally write about my health issues to demonstrate that whatever personal barriers you may be facing it doesn’t automatically mean that you can’t succeed. And not only succeed but excel. If you have joy, passion, commitment and dedication there are very few obstacles which can’t be overcome – you just have to find your own unique way over the hurdles.
I wouldn’t wish my situation on anyone but I doubt very much whether, without it, I would be the photographer I am today. It is from the suffering, isolation, discrimination, abandonment and lack of compassion which many of my ideas for photographs have emerged. My composite images, in which I feature, give me the opportunity to be free from the chains which bind and its through them I can express my unwavering awe at the beautiful world in which I live, my love of nature and give voice to both my pain and my joy.
Every journey through life is unique. Your journey may be more treacherous, the terrain more uneven and the path more stony but that simply makes each step more precious. Each one of us has our own individual story to tell and I hope that despite any obstacles you find a way of telling yours.
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Thank you for sharing your story. I too am a disabled photographer with a rare condition and love reading stories of others like me or maybe not like me. You are so right, every one has a different journey and path. Again, thank you for sharing.
So sorry to hear you are also living with the challenge of disability, but delighted you are still able to follow your passion and do what you love. Appreciate you taking the time to comment ❤
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