My experience as a performer with a chronic illness

Gigi explores their experience working whilst battling an incurable illness called ulcerative colitis. A form of IBD, this illness flares up suddenly and can impact daily life but also can be stable and well controlled through medication.

My experience as a performer with a chronic illness

Living with a disability of any form is difficult. But they are what makes you you. Without making my illness a personality trait at drama school, I wanted to create work as the only one with a physical disability to showcase how truly life can be affected.

I was diagnosed with mayo 1 ulcerative colitis in my first year at Rose Bruford when I was just 19 years old. My mum has this illness so I guess I always knew it was coming. Luckily, I was quickly diagnosed and put on assistive medication called mesalazine which controls the illness. I've struggled with flare ups, detoxing my body before colonoscopies, serious illness during assessments, all whilst earning a first in my second year. Anything is still possible and whilst I won't patronise with how I did it, perhaps to my health's detriment, I want to explore how the arts owes those with chronic illnesses and disabilities a lot more - with representation, normalising disability not just as a plot device and accessibility. 

Accessibility

I love my drama school. It's done a lot for me with mental health support, learning disability support and my actual performance training however, something they struggle with is accessibility. There are not enough toilets near every studio block meaning that if I had a flare up, I had to run across the school to find one. Rose Bruford has 4 performance courses plus Design students so, they are busy. The disabled toilets are a flight up so I'd also have to deal with stairs. One assessment day, I was ill and in and out of the assessments running to the toilets and back. This really impacted my self esteem - I felt embarrassed in front of my year, patronised (unintentionally) by teachers who felt sorry for me and annoyed at my body that it would do this today of all days. I grew to recognise that I wasn't taking care of myself. I was eating fast food or oven food too often, I shouldn't be eating dairy but then I realised, why am I making changes and the school isn't? 

Something every drama school lacks are lifts or facilities easily accessed by students with physical disabilities. If me as a student that can walk, if in extreme pain to the disabled toilets, why should they have to even more so? Let's take a broader look.

Theatres are increasingly gaining awareness. Audio described performances, relaxed performances, captioned and signed ones and access hosts included in staffing within theatres but what I have seen lacking first hand, is facilities. Enough access toilets to accommodate the growing numbers of patrons, entrances in smaller, upstairs or west end theatres. The Vaudeville is well known for its lack of access facilities when Six moved there. It alienates a huge sector of the following of the show. Increasing access seriously pays off in the end.

Representation

I can't say I've ever seen someone on stage, screen, radio, online content have a chronic illness or a disability like it. If disabilities are championed its often physical, even though its nowhere near the representation there should be. I have never seen someone with my illness on screen or dealing with it. I feel there would be more understanding and awareness if this was 'a thing'. Something which would help drama schools, schools, universities be more accommodating. It would also be welcome for characters to have disabilities that aren't part of the storyline but just a part of life. An example of this is the James Bond movies where every villain has a physical impairment or disability which makes them 'scary' or 'pained' through a dramatic childhood. This certainly doesn't send the right message to a young audience does it?

Normalisation

I am writing a one person show about love and relationships and within it, I want to normalise my illness. The play isn't about it, but it's just a section of it. Just like my life.

As a performer, I've actually professionally had a lot of understanding. Once my colleagues and tutors understood and knew the best way to support me, I have been treated with respect, dignity and with knowledge of what I have to go through. My closest friends knew my tablet routine, reminded me I couldn't indulge in that once ice cream because I'd be ill for days and my tutors have more understanding of my needs in terms of leaving the classroom if needed. But that's after 2 years of building a relationship with over 40 hours contact time a week. Professionally beyond my degree I'm in the dark as of what it expect, but with the industry opening its eyes more every minute, I'm excited to seize opportunities with my illness in tow.

My disability isn't my personality and I'm so much more than it, but for now until we as a society have more understanding and less ignorance, I guess I'll have to shout about it and encourage people to educate themselves about it a little longer.

Header Image Credit: Crohn's and Colitis UK facebook page

Author

Gigi Downey

Gigi Downey

I am a third year actor at Rose Bruford College as well as a director, musician and writer. After completing my Gold Arts Award in February 2018 at 16, I joined my Arts Award organisation Babylon Arts as a steward and duty manager and I've done other teaching and facilitation work as well as working in theatre such as guest experience, bartender, box office admin and on the stage. I'm about to head to the United States to study musical theatre and preparing to write a dissertation on, in broad terms, how theatre explores consent and desire.

https://www.voicemag.uk/interview/7047/where-are-they-now-with-gigi-downey

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