Accessibility Survey
How important is participation in the arts for you or your charge?
Very Important
What is the biggest barrier you face when it comes to attending an art event?
Time and/or date of event. Evenings are hard for me.
What support is most important to you in your work as an artist?
Support with exhibiting/publishing my work.
Tell us about your day-to-day experience of the condition
I experience pain, fatigue, and weakness in my left leg. Each day, to some degree. Sometimes it's a general tightness in my leg, a hardness in my calf like a perpetual cramp. Other times, my leg feels weighted down as if invisible shackles slow me down or I'm sitting with weights on top of me.
How do you describe your condition to people who don’t know you?
I tell them what my doctor said - it has overlapping symptoms of lupus, rheumatoid arthritis, and myositis. I tell them pain is irregular and unpredictable. A sudden burst of twitching in my calf muscle can start while I'm writing at my desk. My leg can suddenly feel weak, as if it will give out, while I'm crossing the street.
What symptoms do you experience
What's the one thing you want people to know about your condition and/or work?
It's an invisible disability, which is why I write about it. To make it more visible. Because I have learned, everyone is walking around with scars and pain - we just can't always see them.