Root Experience is in the middle of an exciting community arts project in Brighton, working with people who are living with invisible disabilities.
I am one of the people in our group with a hidden disability. I am dyslexic. There, I said it. 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.
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.
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.
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 the Hidden 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.
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).