controlling confrontation.
Words by Winnie Temple, in conversation with Leighton Frame.
Could you describe your disability in your own words?
“I have hypermobile EDS. So essentially with the EDS it’s a hidden disability that quite a lot of people have, but don’t often realise that they have it... when I got diagnosed with it, I was like sixteen years old and so they didn’t really tell me much about it, so I’ve had to do a lot of research on my own, so I’m still trying to figure out exactly what is going on. They diagnosed me and were like, ‘here’s some physiotherapy, good luck.’”
“Essentially, it means that my connective tissue isn’t very strong, it’s very elasticated and often results in my bones and my joints hyper-extending. In recent years I’ve learnt it extends further than just my joints and muscle, it also can affect my stomach, vocal cords and intestines- anywhere there is connective tissue.”
“It means I live in a permanent two to three on the pain scale... I have to regularly keep up strength doing my physio.” “I was a dancer for seventeen years and that’s how I found out, I got into a massive injury.”
“If I’m dancing, I have to tape up my shoulders to make sure they don’t pop out. I wear knee braces and wrist braces.”
“My vocal cords get affected... I used to sing in musical theatre troupes, and I realised I was struggling to maintain the things that I loved doing, like dancing and singing, because my connective tissue wasn’t doing what it needed, resulting in me constantly getting injured or burnt out. Sometimes I could sing perfect pitch, other days I sound like a different person.”
What was the inspiration behind your shoot?
“It started off with wishing I could have mobility aids that actually felt nice to wear and weren’t just black or beige straps on my body... a lot of the time I don’t actually want to tell people that I’m disabled, I would like to just go about my life.”
“We wanted to combine a lot of the things that I love in day-to-day life, I’m a big fan of clowns, puppets and drag and theatrics... I love the idea of being a marionette that’s strung up by these thoughts and feeling of the outside perception and to try and break free of it. We were heavily inspired by what I felt people perceived me to be like.”
“Nothing frustrates me more than when I am perceived to be uncapable or weaker. I want people to recognise that I need assistance in areas, but I don’t want people to treat me like a baby. I’m capable of doing so many things if the right steps are put into place.”
Are you still able to perform?
“Now I’m more aware of it I’m able to put in the precautions that I need to ensure I’m able to do the things I love. I’m a drag king, so a lot of dancing is involved in that. When it comes to choosing songs to perform, I have to pick songs that I know I’ll always sound fine no matter what my vocal cords might do that day. It does often mean that I have to pick songs that feel a lot safer for me… which can be quite upsetting.”
Do you find that hidden disabilities aren’t taken as seriously?
“Yes, the exhibition piece we are putting together is about that element. It’s the stereotypes that come along with people that have disabilities, especially hidden ones. Because I’m quite active, and what people would call ‘fully functioning’ in how I live my life, I’m able to do all these things but I have to aggressively push... I’m working at a hundred percent level at all times to be able to accomplish anything.”
“My biggest frustration is that I suffer from this thing that causes me agonising pain... yet people always stand there and give me unsolicited advice or says they’re double jointed too... that’s not it.” “A lot of people look at me and say, ‘you don’t look disabled.’” “It’s frustrating when a lot of the things you experience happen behind closed doors and are not very visible... it almost diminishes the importance of our disabilities and how impacting they are in our lives.” “It feels restrictive because you feel like you have to play to the stereotype of what being disabled is, which is just so stupid.”
