Resources

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In 2021, Producer & Director Louise Wildish undertook the project Enter Stage not quite Right to explore whether theatre and arts working models are accessible for directors, producers and arts professionals with chronic illnesses. The project involved exploration and research through a series of interviews, time in the studio and the creation of a film resource. Here, she writes about why the work took place and shares some of the findings from the making of the film.

 

I can’t tell you the exact time I realised that whilst I was working to support many disabled artists with their access and campaigning for positive change, I had absolutely ignored my own needs. Even defining myself as disabled took quite a few years. It’s complex right, Chronic illness and disability? Prior to becoming ill, I had worked in theatre as a director and facilitator for about 15 years. When I became ill suddenly, it took me away, mentally, physically, spiritually and emotionally, and, of course, professionally. Like anyone who has ever been through prolonged illness or trauma, I didn’t care about anything other than getting better. 15 years later and I’m not better, and although no longer bed bound (let’s talk about that phrase one day), I am still er… chronically ill. I am grateful that I can mostly work between 3-6 days a week location and illness flare-up dependent (it’s actually much more complex than that – google the spoon theory). For the nosy or the caring souls of you, I had a baby, caught a virus, collapsed, nearly died, couldn’t move, and six months later ended up being diagnosed with M.E. (Myalgic Encephalomyelitis). The point being, after I returned to work, I never felt able to work in theatre as a director and, even now, struggle to find models that are accessible.

 

The models just didn’t and don’t include me.

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Getting to the point of writing this has taken years, lots of questioning and discussion with others and internally with myself. I would never have publicly decided to talk about my illness/disability even three years ago. Let’s be honest, the words or connotations associated with illness are not usually positive ones. Apart from the occasional condescending ‘inspirational’ word used in press articles about people who manage to stay alive. Generally, the world views the chronically ill as a drain or problem. The chronically ill sit within disability but we are somewhere on the peripheral – she’s not disabled, she’s chronically ill. There are conversations to be had that have so far been avoided. I really wanted to have that conversation.

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If I was on the One Show, I would be saying this was my lockdown project. In early 2021 (quite honestly for me the most accessible time ever!), I embarked on a project called Enter Stage not quite Right. Supported by Arts Council England, I wanted to research whether working models in the arts and particularly theatre were accessible for chronically ill theatre directors and other arts professionals.

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I let #twitterdoyourthing and I was overwhelmed by how many people contacted me who were chronically ill and working in, had worked in, or wanted to work in theatre and the arts. I also contacted quite a few senior leaders in venues who, to my knowledge, were not disabled or chronically ill. I am still shocked at how many ghosted me. Probably because it was me (an unknown or worse known) but these are people who are actively tweeting about disability and inclusion. Sometimes the suggested response was to talk to the ‘access’ person within the organisation, indicating they had missed the point about senior leaders changing their perceptions and hopefully policies.

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I interviewed over 20 individuals on Zoom, most (68%) identifying as chronically ill disabled directors, producers and senior managers who all worked in theatre, dance and music. Most were freelance artists, some senior managers and artistic directors based in NPO organisations. The interviews set out to explore our current theatre working models and whether they are accessible for chronically ill arts professionals. The first thing to say is that everyone I interviewed agreed to be interviewed, so by that very nature I was speaking to people who were on board and doing the very best they could to make the world more inclusive.

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When I first met people individually in the Zoom room, there was almost a sense of relief and gratitude that we had come together and happiness to just take time to talk to another person with a chronic illness working in the arts. The interviews were at times incredibly emotional – listening to very familiar stories, all echoing each other, of struggling mentally and physically, hiding illness from employers through fear of not getting work, playing down how ill they were, and not communicating access needs, or struggling mentally with whether they have the right to even ask for access support. This, in addition to needing to ‘manage’ a health condition (if you don’t have one, it’s like having a part-time job or a kid in primary school around Christmas time!), created a very familiar picture between many of the interviewees.

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General findings from the interviews:

• More than 70% of interviewees who felt supported with their access needs were working in subsidised theatre with other chronically ill disabled people or people who were committed to working differently.

• More than 90% of the chronically ill people interviewed had previously or currently do hide their illness or the severity of it through fear of being perceived as a problem or losing employment.

• More than 75% of people interviewed felt that there wasn’t really an interest in working with chronically ill disabled people and that if change was to happen, it would be as a result of other initiatives around working models and needs rather than due to disability – for example, the advocacy work and change taking place around childcare.

• More than 85% stated that their preferred working model was either part-time, time off during the week, an associate to support, or better use of the existing model.

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What is clear is that chronically ill disabled artists and professionals are still navigating their way and are struggling to communicate their needs. Education and advocacy around chronic illness in the arts has been pretty much left off the agenda with our working models currently not supporting artists and arts professionals.

What is reassuring though is that more conversations and projects like mine are happening and bringing this agenda to the table. During lockdown, so many organisations became increasingly accessible through online digital programmes. Those organisations who are committed to access and inclusion are the ones who are now considering keeping some of those digital components and delivering creative hybrid programmes. There is good strategic work and campaigning taking place around working models and working practice through organisations like PiPA and Inc Arts.

 

Perhaps next time we all plan a weekly schedule, we should just stop and ask ourselves, ‘Have we checked in with everyone’s needs?’ Could it really be that simple?

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To support the project Louise has created two films which include some of the interviews and findings. 

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Watch the full-length film here

Watch the shorter teaser film here

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or scoll down

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