Shared with Alison Standley for her research project as well as here on my blog.
I became disabled 6 years ago. Overnight I lost almost all my eye sight, so much that I am now registered blind; and within a few months was using a wheelchair full time. The cause is the Neurological condition - FND.
Before being disabled I loved the arts and would go to theatres, art galleries, museums, concerts, ballets and the opera whenever I could. At least once a month I was engaging with the Arts.
I also engaged with the arts by playing musical instruments for my own relaxation, singing in choirs (I started a community choir) and writing a huge amount of poetry. At the same time my daughter was becoming a musician, she was 2 years into learning the piano and double bass when I became disabled (she's now 15 and the lead double bass player in the Berkshire Youth Symphony Orchestra). The arts are hugely important to us.
When I became disabled my life turned upside down in every single respect and it took a lot of time to adjust but we did. I don't feel disabled in my home any more - it is set up so I can do everything I need and want to do. I have amazing friends who plan nights out and weekends away which are accessible. I am stubborn/ determined to keep living the best I can and parenting the best I can.
But the one area where I really struggled was accessing the arts. The very thing which brought me joy and should be a source of healing and inclusivity was mostly inaccessible to me. Here are a few examples of what I mean…
I had to be the first on the phone to get a wheelchair space at any events or theatre shows or concerts - and then they'd never provide two seats with me so how could we go as a family any more? It meant my husband had to sit somewhere separate to my daughter and I but then they didn't want a child to be with me because I should have someone who could help me in an emergency; but nor could she sit on her own. Can you imagine?
I couldn't take my daughter to see concerts; pop, classical or anything else, and she didn't want to go without me. Can you imagine?
We could get to some art galleries and that was a wonderful feeling but then I'd ask for a large print guide or an electronic guide for my phone and there weren't any. So then my family had to read the descriptions of the art. And they would to a degree, but why should they? And I missed out, I know I did; and my daughter always had to step up into a caring role when she shouldn't have had to.
Plus, art is all hung to be viewed stood up, useless for wheelchair users and especially when I need to get close to it. Lockdown has been wonderful because there have been so many virtual tours of galleries and I've loved experiencing them this way.
And then of course there are the galleries and buildings and shows which are just completely inaccessible to wheelchairs and unexplainable to the visually impaired without great skill. I was literally excluded from whole rafts of the arts.
I got so cross about this for a few years and wrote letters and emails and complaints and just got rubbish responses about old buildings and the cost and blah blah blah. I gave up bothering.
The place I returned to every year for my annual art input was the Tate modern - they were amazing. My local theatres in Reading, The Hexagon and South Street Arts Centre, were also amazing and I'm so thankful for being close enough to go to as much as I can at those venues.
The music provision for young people in my area is run by Berkshire Maestros. I don't think they'd had a parent as disabled as me before but they were amazing. They have always made it possible for me to have the best experience when my daughter is in a concert. They've found out where she'll be on stage, they've thought about sight lines and best sound quality and they've reserved me seats for my whole family without any fuss. It is possible!!! They are also being really proactive in providing music experiences and lessons to disabled young people and ensuring no one is blocked by their disability.
Finally I want to share my own experience of trying to explore the arts as a disabled person. Losing my sight opened up a world of possibilities in the arts which I wanted to explore. Suddenly I couldn't judge myself as harshly and I felt I wanted to try and express myself in art. But trying to find an art class which is wheelchair accessible is almost impossible. Venues aren't accessible or if I could get there the tables were too high etc etc etc. I realised I always needed someone with me and that helped, but I still had hardly any options. The first class I found was a mosaic course which was wonderful because my friend could help with colour picking and the rest was tactile. The tutor of that course was amazing and through her encouragement I tried loads of other types of art at home - I started flinging paint on large pieces of wood and using my hands on abstract ways. I played with clay in various ways. And I started using magnifiers for drawing. I even wrote a book with simple line drawings and poems which is now published and selling really well.
I caught covid and now have long covid which means I have almost no energy all the time. But I've embraced digital painting and drawing on my iPad. This has been a complete revelation because I can magnify hugely to work on detail and produce pieces which I can imagine. In fact my first exhibition goes live this month, and yes it'll be completely accessible with audio descriptions of every piece.
The arts are so important for everyone's lives and should be accessible for everyone. It's time to make this really happen.
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