Joe, who lives in Johnstone with his wife Tracy and daughter Winter, has Becker muscular dystrophy.
He is one of 50 people with different muscle-wasting conditions, who shared their reflections on how various pictures made them feel. This was for an exhibition called Reflections in Colour, which has since been turned into two wonderful books.
Joe was diagnosed with Becker muscular dystrophy when he was three months old. There was a family history of this condition and a muscle biopsy confirmed that he had inherited it. Joe’s mobility fluctuates from day to day, which he says fits the description of a ‘dynamic disability’. He now uses a walking stick and wheelchair to get around.
For the last two years, his personal experience of disability and mental ill-health has developed into a passion for advocacy and a drive for sharing his story with others.
He has developed a skill and a voice by writing and blogging as Dystrophy Dad. He finds this regular production to be a very effective way to share with the world his life and the experience of being a disabled father.
Of the blog, he said:
This is important as talking about difficult situations openly reduces stigma and helps people realise they are not alone. Even the strongest among us need help sometimes.
My blog has allowed me to be part of the lives of many with muscular dystrophy, from patients with late diagnosis to expecting parents unsure of what the future holds for their family. It gives my daily challenges purpose, and serves to illustrate how connected we all are. I’m forever open about my experience, as I hope to encourage others to do the same. Why suffer in silence when you have an entire community you can turn to?
For the Reflections in Colour exhibition, he chose an image entitled Light at the end of the Tunnel to reflect on.
Creativity is my medicine, the light I seek when days are dark. Childhood is often the only time we are allowed to play and to indulge in our creativity, before the burdens of work and adult life take hold. We’re free to explore in the forest of our mind, to waste time making mistakes and find out where our talents lie.
All any of us aspire to do is leave our mark on the world before we leave it behind, but in the grip of a progressive muscle-wasting condition like Becker muscular dystrophy, it’s easy to feel that your efforts don’t matter. Whether you express yourself through writing, art, music, really anything that brightens the days of others. It is needed.
Sometimes you need someone to help you through the darkness, other times you’ll find your own way, but I promise you the light is there.
The books, which feature the high-quality prints, are available to buy through photographer Chris Howard’s website. Every sale will result in a donation to MDUK.
Read more about the beautiful Reflections in Colour books.