We're right in the middle of an exciting community arts project in Brighton, working with people living with invisible disabilities. In the spirit of bringing things out into the open, our artistic director Simon has something to share...
I'm just going to go right ahead and say it. I'm one of the people in our group with a hidden disability. I'm dyslexic. It’s taken me some time to properly ‘own’ my dyslexia. It has been a source of shame and embarrassment for most of my life. In trying to conceal my condition, I have let people think I am lazy and disorganised. A procrastinator. The truth is, I really can’t get my ideas onto paper. And my fear and anxiety around the shame and stigma of ‘being unable to write’ has stopped me from achieving and doing things that I want to do. Indeed, it has historically stopped me moving Root Experience forward as fast as I would have liked.
Collaboration
Three or four years ago, I started working closely with Jess, our strategic producer, an amazing actor, and a mean writer. The ease at which Jess can tumble words together and create a beautifully written article is incredible to me.
We started to work together to produce written outputs. I could steer, and with her support, quickly produce work that properly reflected the quality of my thoughts.
I started to realise that it wasn’t that my ideas or storytelling or anything else was rubbish, just the mechanism for putting it all together. Of course, as a dyslexic, I had been told that before. But underneath my diagnosis I had an insidious, internalized, suspicion that I was simply not as good as everyone else.
Stigma
I had a meeting recently and it was all going well; we were getting on, my pitch was made, they liked my ideas. Then they asked me to do a quick written evaluation. It made my heart sink and I had to tell them that I couldn’t do it. Eyebrows were raised. I told them though and I owned it. The outcome might not have been what I wanted, but it was a huge step for me.
That’s not unusual. Provision for dyslexic people in everyday life – in job interviews, online, or at work is not available across the board yet. And nor is provision for those of us with anxiety or autism or with the myriad of other hidden disabilities represented at our workshops.
I hope they thought about it afterwards and perhaps, in the future they might consider how they could work with someone like me.
Motivation
I know when I come up against stigma, it’s not because I am not smart or funny or engaging, or because my ideas or Root Experience aren’t brilliant. It’s because people don’t understand dyslexia. People don’t know how limiting it can be and don’t appreciate how a simple change in a process can mean all the difference to me.
That has been the driving force behind our Hidden Stories project. The reason the project must be led by the workshop attendees. I don’t yet know what it’s like to have multiple sclerosis or chronic fatigue syndrome, but I’m getting an idea of that and hoping I can better understand those experiences. I’m hoping the whole project will help us all to better understand the life experiences of the people involved and through that, that we can all better understand how to be properly inclusive. Whether that’s in the arts, in the workplace or in the community.
Disclaimer
Of course, I didn’t write this blog post myself either. Well, no, to give me my due, I did. I did put the words together in a jumble and spill them out. I wrote it in the creative sense – in the way a musician writes a song. That is the important bit and now that I don’t have those same anxieties I can say it aloud; I wrote this post – in my head a million times, (but Nancy typed it up).
Do you have a Hidden Story you'd like to share with us?
We'd like to know how your invisible condition has affected your day-to-day life, and hear of the kind gestures or dismissals you've experienced along the way. Or can you offer a perspective as a friend, family member or carer? Or as someone who now feels differently after learning about someone's experience with an invisible illness?
The stories we collect will form part of our Hidden Stories project, which is about exploring – as a community – the way we behave towards people with conditions and illnesses which can't be seen. Only by sharing our experiences can we begin to understand them.
Get in touch with Jessica (jessica@rootexperience.org) and we'll help you to (sensitively) share your story and find support if you need it.
Join our support group on Facebook
We've started an online Hidden Stories community for those living with or affected by invisible conditions and disabilities. As a closed Facebook group, it’s a safe place for sharing stories, asking questions, and for mutual support and solidarity – amongst people who really know how you feel day to day.