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?
Cost of ticket.
What issues prevent you from taking part in arts activities?
Financial costs, physical limitations, lack of support
What three things might encourage you to take part in arts activities more often?
Supportive community. Accessible activities. No cost options.
What support is most important to you in your work as an artist?
Support with exhibiting/publishing my work.
What advice would you give to any arts organisation planning to develop activities and events for creative people like yourself?
Offering flexibility, option and support is important, because things are fluid when you have a chronic illness and can change. It's important to offer support, as sometimes people like me need varying levels of support -- some days it might be more than others.
What do you personally do to make art accessible to yourself?
I have a lot of things to aid me when I need help. And I've developed strategies to deal with issues and disabilities that come with my illness.
Tell us about your day-to-day experience of the condition
Often people with Still's Disease refer to themselves as dragon slayers due to the high fever and inflammatory aspects of the disease (our dragon). I think this is fairly accurate to describe my experience with Still's Disease. This disease can be aggressive, dangerous and devastating, as a battle with a dragon would be -- but sometimes the symptoms ease and you can slay it for some time. Some days the dragons only wakes a little, and other times a lot. Still's Disease is something I deal with every day. It makes it difficult to impossible to do many normal day-to-day activities. There's no pushing through this disease, as any stress or physical exertion make it worse. Most mornings I wake up with my joints on fire, unable to move them due to stiffness. It generally eases after an hour or two. Some days I can barely move, while others I have limited range of motion. I adapt to how it affects me each day. If I can't write or be creative, I always try and do something related to it, even if it's just reading.
How do you describe your condition to people who don’t know you?
Sometimes it's hard for me to talk about my illness with someone I don't know. I'm trying to get better at it. First, hardly anyone has heard of Still's Disease before. I might describe my illness in the terms of diseases they've heard of -- like if lupus and rheumatoid arthritis had a baby, it would be Still's Disease. If someone understands chronic illness, I like to use the dragon analogy. Every day I work as a dragon-slayer who battles my dragon, a rare illness known as Stills Disease, which causes inflammatory arthritis, fevers and systemic issues. My fight with this devastating illness turned into a chronic journey.
What symptoms do you experience
What's the one thing you want people to know about your condition and/or work?
One of the things that is ever present is uncertainty. First, this disease isn't one you can test for. It's a diagnosis of exclusion -- so there's always doubt. And also, it's never the same. The severity of symptoms vary and change over time -- some come and go and some are always there. This type of struggle is quite common in chronic illness. One of the reasons I write about my experiences is I never fully understood this until I got sick. I want to reach others like me who might be struggling with similar issues.