Hour by Hour. Dynamic Disabilities and Finding my Balance.
Words by Winnie Temple, in conversation with Ran Bush.
Could you explain your disability in your own words?
“I have FND, Tourette’s and Autism. My disability is dynamic, meaning it is a disability that fluctuates hour to hour, depending on my fatigue levels.” “My symptoms can change a lot.” “Just because my disability is dynamic doesn’t mean it’s not real... I don’t understand it myself, no one really does anyway. It’s a constant game of balancing symptoms, no one sees the heart palpitations, sweating, jelly legs. I’m always having to judge whether or not I can do something.” “People don’t understand that chronic disabilities can be invisible.”
Do you think accessibility is improving for disabled people?
“One hundred percent, the arts industry is getting better with inclusivity, but it should’ve happened years ago.” “I had to stop doing drama because theatres just weren’t accessible... cinemas aren’t either.” “Diversity brings new stories and that’s the point of art... art should be exciting. Disabled people should be included at all levels of the creative process, from smaller projects to the top level like the MET Gala. People with disabilities should be included way more behind the scenes too.”
What was the inspiration behind your shoot?
“The inspiration behind the photoshoot was to continue my advocacy work on dynamic disabilities and that they do exist. Each photo represents a different part of my disabilities. Sometimes I use a crutch, sometimes a wheelchair. Sometimes none at all. My tics can act up at times, and so can my sensory processing issues. Each photo shows how my disabilities may be visually different each day, or a part of the day.”
“I play hockey, field hockey, at UEA. It’s one of my special interests and I’ve played since I was seven. I’m keen to carry on playing hockey. That’s why I wanted to include a hockey stick as a prop.” “There’s lots of stars in my photoshoot. Stars are my favourite thing ever, and the points can represent all my different symptoms and the different pain that I feel.”
