UK Music

Access All Areas: Improving accommodations for chronic illness in the industry

Emma Wilkes looks at the landscape for those with chronic health conditions and hidden illnesses in the music industry, and asks what we can do to move forward.

Emma Wilkes
  • By Emma Wilkes
  • 17 Mar 2023
  • min read

Society has come to understand that not all disabilities are visible or obvious. In fact, the vast majority aren’t – a US study found that almost three-quarters of disabled people don’t use a wheelchair, cane or any other instrument that might visibly signal their disability. Consequently, when it comes to conversations about improving accessibility in the music industry, there needs to be space to discuss the accommodations for peoplebeyond just wheelchair ramps, hearing loops and lighting levels. 

However, according to artists who do have long-term chronic health conditions, the discussion doesn’t appear to be one the industry is willing to engage in. ‘The conversations aren’t really had, and when they are, they end very quickly,’ says Mikaila Delgado, frontwoman of Australian rock band Yours Truly. ‘I don’t think people really know how to handle it.’ 

Mikaila has hypermobile Ehlers-Danlos syndrome, one of the more common forms of an inherited condition that affects the body’s connective tissues. It can cause chronic pain, gastrointestinal problems, slow injury healing and joint instability, often leading to dislocations. After she performs, she usually needs to immediately sit down to relieve pain, and if she were to injure herself on the road, she would likely have that injury for the rest of the tour. 

‘I feel like, because people don’t understand these conditions or maybe because it hasn’t been at the forefront of the scene, people don’t feel like they’re knowledgeable enough to speak on it,’ she continues. ‘I understand that people do not want to be spoken on behalf of, which is a very valid thing – I don't want someone to speak on behalf of my experience. But I think that we should be giving people that have had those experiences a voice.’

‘When you look like a woman, or when you're queer, and you're a musician, and there's no one else fighting for you, people are going to be like, "Oh, they're difficult to work with."'

There are multiple reasons these conversations are not being had. At an individual level, many artists are reluctant to disclose their chronic conditions in order to have their access needs met. According to a survey carried out by the charity Attitude Is Everything in 2019, two thirds of disabled artists have compromised their health or wellbeing and 70% had withheld details of a health condition over worries it could impact professional relationships. 

Experimental artist Straight Girl, who lives with chronic irritable bowel syndrome, points to the fear of being perceived as ‘difficult’ as a reason for artists’ reluctance to talk about their health. ‘The worst thing in the world for me is to be considered a burden or an annoyance or difficult,’ they say. ‘When you look like a woman, or when you're queer, and you're a musician, and there's no one else fighting for you, people are going to be like, "Oh, they're difficult to work with." That’s a really difficult thing, trying to balance what I physically need and what I’m comfortable asking for because I don’t want people to think I’m annoying or being difficult.’

Their access requirements usually revolve around their rider, as it is necessary for them to eat at least an hour or so before they go on stage.  ‘If you’ve got a gastric condition, you’ve got to request stuff on a rider that isn’t going to affect how you physically feel,’ they say. In the past, however, this simple request hasn’t been met. ‘If you're not going to support me in the way that I need supporting, I can't do the show the way that it deserves to be done.’

Mikaila is in agreement. ‘I think that there are people that are afraid to speak up about what they're going through, because if you're an artist and you're in a band, you're like, ‘Maybe I won't get booked on shows or on tours, because people don't think that I am well enough to do it, or I'm seen as somebody that can possibly not perform to the best of my ability.’

Another argument exists, however, that the higher-ups in the industry don’t seem to want this conversation happening. The Howlers’ frontman Adam Young suffered a transient ischemic attack, or TIA – commonly known as a mini stroke – in 2021 that has left him with after-effects, particularly a residual headache that never goes away and isn’t treatable with painkillers. Ironically, he pinpoints its cause to the stress of his music career, largely put on him by the wider industry. 

However, he had been advised by the band’s previous management not to disclose his condition publicly to fans, despite him wanting to be open about it in case his condition ever led to shows being cancelled. ‘That hurt a lot,’ he says. ‘Because, to me, that felt like the music industry was just saying, “If you say this, nobody will want your damaged goods.” That’s not how it should be.’ 

Adam believes that artists disclosing chronic health conditions is frowned upon because it conflicts with the glossy ideal of the artist as a polished product rather than a human. ‘I would say for the most part, the industry doesn't want you to speak about it because how artists are displayed and portrayed in the industry. They have to be shiny and new,’ he says. ‘They have to be just out the cellophane, they can't be slightly damaged or broken. But that's what art is. Art doesn't come from a happy, shiny place – even happier songs come from some sort of cathartic pain.’

‘I feel like people need to remember that those people on stage are still human. They are not superhumans.'

So what needs to happen? The culture of the industry needs to fundamentally change, first of all, to allow musicians to feel like they can ask for what they need and talk about their conditions without fear of it being a detriment to their careers. Ideally, the question of accessibility would be posed by the venues or promoters themselves. ‘Lots of venues I’m noticing are now getting better at asking,’ Straight Girl observes.

Culturally, we also have to examine our unhealthy manner of looking at people in the spotlight as infallible. ‘I feel like people need to remember that those people on stage are still human. They are not superhumans,’ says Mikaila. ‘They are no different to anybody else. They are still made up of the same things. But sometimes people have bad days.’