Sophie blogs about her participation in an MA Project

Hi Everyone,

So as you may know if you follow the CVI Society on social media, I have been helping a lovely lady named Anissa with her MA in Narrative Environments. Helping her create an exhibition type event. To showcase CVI and how designers can help adapt things to make it easier for people with CVI. I had been filming clips and recording audio clips to put into or alongside objects, to be played whilst people were viewing the objects. For example we had a makeup box inside which was a video of me doing my eyeliner. Or there was a glass which had a video of how I pour a drink along with it, or how I fold my clothes, (badly I must add).

We were invited to attend the event to see the collection and take part in the small workshop. It was held in the Wellcome Collection, which I'll admit I had never heard of before. It is across the road from Euston Station. I cant believe I've never noticed it before...but that's CVI.....

It was held in the reading room at The Wellcome Collection which is a museum, a medical museum. Having had a look around the different floors, it is interesting to see the journey to the modern medicine we have today. Medical discoveries. As someone who has spent their whole life in and out of hospital and technically having made medical history, it's cool to see the history of medicine.

So just a warning, I am not the best at explaining this, so if you were looking for an educated synopsis of what the project is about and what we hope to gain out of the project, that's not me. I'll try my best though.

I met Anissa at the CVI Society Convention in 2017 and she asked if I would be happy to collaborate on a project for her MA in Narrative Environment, and I'll be honest I spoke to lots of people on the day, so It slipped my brain and I didn't expect her to get back in touch with me.

About a couple of weeks after the convention, she got in touch with me and asked to meet to chat about my experiences of things, in terms of the environment, and having CVI. It worked out really well because I was due to be going to London to see Dream Girls,(which on that subject was amazing). The cast were soooo good, although we were so close we could see them sweating!

Before the show we met up with Anissa in Pret a Manger, and she showed me her plans and took notes of what I said. Then we emailed back and forth, what was the initial idea changed, logistics and space wise. We then met up when I was next in London for an audition workshop, to catch up on where the project was at. Anissa mentioned recording me doing things such as pouring a drink and folding my clothes.

We soon arranged to film the video and audio and this time Anissa came to my house, which I happened to completely forget about. My mum woke me up then the doorbell went and it was Anissa. Imagine my shock..... After that lapse in my memory we started recording. Anissa wanted it to be quite natural in the sense that although she wanted me to talk about certain things and do certain things, it wasn't scripted or anything like that.

Whilst doing this, Anissa showed me a prototype for the objects that would be at the exhibition event. There was a hairbrush and it had a handle but there was a long rod between that and the brush and it was all twisted. It was really cool. It was meant to represent what I said about how I struggle to brush my hair as my sense of depth perception and spatial awareness is poor. When Anissa showed people in the workshop they were confused. It took a bit of explaining, because they couldn't work it out.

On the event day, we arrived a little late, train troubles and it was snowing as well. This made the walk to the Wellcome Collection feel so much longer. We arrived and met Anissa and everyone went over to the exhibits, whereas I stood back and watched as I can't bear hearing my own voice or myself on record. I am one of those people who would never be able to watch a movie they were in. I did warn everyone though.

Then because we arrived late it was straight into the workshop, we had a few people turn up. They looked through the exhibits and had to think of an idea to make things easier, i.e. in terms of mobility, socially or academically. The ideas they came up with were interesting and I think they could be fleshed out and made better and more workable. Some of the ideas though were a little weird and I thought I wouldn't probably use.

Overall I think it was a really interesting experience and has potential to really work, given you have people on board who can guide and offer advice re. CVI. Importantly, my opinions and what works for me, may not be the same as for someone else with the condition. Everybody with CVI is different which I did try to stress that I am only one voice. I think to make it the best it could be and get really good ideas from it, you would need more voices and not just the same type of voice if that makes sense.

So that was my experience helping this project. I have really enjoyed it and loved spreading the word about CVI. Sorry about the delay in writing this, I haven't been very well since the event. Actually I wasn't feeling well on the day so I think that also clouded how able I was to be at the event. So if anyone who was at the workshop reads this, sorry if I seemed a bit odd.

I am currently in the midst of trying to feel better and finding out why. But I am determined to get more of these blogs out.

So thanks for reading.

Until next time, I'll try not to leave it so long next time!


CVI Society

The CVI Society is entirely run by people giving up their spare time to share information and support others.

If you can provide funds for the things we cannot get for free then you can help us to help others.