Advocating for those with chronic illness

In early 2021, 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.  

I can’t remember exactly when I realised that, while working to support disabled artists with access and campaigning for positive change, I had absolutely ignored my own needs. Even defining myself as disabled took quite a few years. 

Before becoming ill, I had spent 15 years working in theatre as a director and facilitator. When I suddenly became ill, it took me away mentally, physically, spiritually, emotionally and of course professionally. 

Like anyone who’s been through prolonged illness or trauma, I didn’t care about anything other than getting better. 15 years on I’m still not better. Although I’m no longer bed bound, I am still chronically ill. 

Looking for inclusive models

For those who care to know – I had a baby, caught a virus, collapsed, nearly died, couldn’t move and six months later ended up with a diagnosis of ME – myalgic encephalomyelitis. 

When I did return to work, I didn’t feel able to work as a theatre director. Even now, I struggle to find models that are accessible, models that don’t exclude me. Getting to this point of writing has taken years, lots of questioning, discussion with others and internally with myself. 

Even three years ago, I would never have talked publicly about my illness/disability. The connotations of illness are not usually positive – apart from the occasional condescending ‘inspirational’ word used in articles about people who manage to stay alive. 

Generally, the chronically ill are seen as a drain or problem. The chronically ill sit within disability but we are on the periphery – not disabled, chronically ill. There are conversations to be had that have so far been avoided. I really want to have that conversation. 

On starting Enter Stage not quite Right, I let #twitterdoyourthing and was overwhelmed by the number of chronically ill people who contacted me. They were either working in, had worked in, or wanted to work in theatre and the arts. 

I also contacted senior leaders in venues who, to my knowledge, were not disabled or chronically ill. I am still shocked by how many ghosted me – people actively tweeting about disability and inclusion. 

Occasionally it was suggested I talk to the ‘access’ person within the organisation, completely missing the point about senior leaders changing their perceptions and hopefully policies. 

The project

I interviewed more than 20 individuals on Zoom, most (68%) identifying as chronically ill or disabled and who 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. Everyone I interviewed agreed to be interviewed, so I was speaking to people who were already on board and doing the best they could to make the world more inclusive. 

When I first met people, there was 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 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, created a very familiar picture between the interviewees.

General findings

•    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.

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?

Louise Wildish is a freelance producer and director.

As a result of this project Louise co-founded the Chronically ill Artists Network which advocates for change for those with chronic illnesses working in the arts.