Taking Care: Supporting Delegates with Invisible Disabilities at Festivals and Showcases

Festivals, showcases, and other industry events are incredibly valuable, but they are often impossible to attend as a disabled person. Part of my role as the artistic director of Second Hand Dance is to travel to festivals and showcases, which offer the opportunity to see work by other artists, network and discuss with peers, and present our own shows. In 2019, however, I had to pull out of presenting my work at a festival due to last minute changes in scheduling and activity that did not accommodate my invisible disability.

The tricky thing with invisible disabilities is that they seem hidden. However, the Parliament of the United Kindgom estimates that 70-80 percent of the billion people worldwide living with disabilities do not have a visible impairment that immediately identifies them as disabled. Institutions need to better support people with invisible disabilities by asking about individual access needs. Above all, I’d ask that anyone running a festival or showcase avoid makings assumptions and approach their event from the standpoint that everyone’s experience is unique.

It took four years for me to start to re-frame my lived experience in terms of barriers that society presents rather than my own inadequacy. The first signs of my disability started in 2013, the year that Second Hand Dance was constituted as a company. I experienced pain in my fingers and difficulty standing or walking for long periods. By 2017, the increased pain and fatigue that was affecting my ability to walk, work, socialize, cook, shower and generally function.

Since then, I have gone through a lot of highs and lows and received generous support from friends and colleagues in reframing my identity using the social model of disability to understand the barriers I experience. Developed by disabled people, this model states that disability is created by physical, organizational, and attitudinal barriers. An individual is disabled because of these barriers and not because of their impairment or difference. The social model advocates for society to identify and eliminate these barriers, thus enabling disabled people to be included and enjoy more independence, choice and control.

I provide a clear access rider that sets out my needs, and my company structure is built around my support, but my access requirements are still likely to send partners, venues, and festivals we work with into a tailspin.

I’m now proud to call myself disabled, but I’m still at a place on my journey where self-advocacy is difficult and internalized ableism is a daily feature. I provide a clear access rider that sets out my needs, and my company structure is built around my support, but my access requirements are still likely to send partners, venues, and festivals we work with into a tailspin. Trying to accommodate my needs last minute can be tricky. For example, I need a support worker to accompany me for longer distances with my mobility scooter. I sometimes need to find a quiet space to lie down in public buildings, which is not always easy without prior planning. This can make me feel frustrated with myself or spiral into thinking I should quit working in dance.

It is, however, important to acknowledge the huge journey it can take for someone to understand and accept a changing condition. The phrase “no pain, no gain” is common in the dance industry. Trainee dancers are taught to push through discomfort, that if they don’t work “hard,” they won’t “make it.” As someone with an energy limiting and pain condition, these are just things that I can’t do. Pushing through pain results in increased pain levels. Sometimes my energy limits are finite, and I can’t just keep going without risking my physical and mental health. The competitive nature of opportunities and funding compounds the challenge of self-advocacy within the arts sector.

Many festivals are wonderfully welcoming, but there is often a temptation to pack days full with shows starting at 10:00 a.m. and networking events carrying on late into the evening. For disabled delegates who need to carefully manage energy levels, this can present an uncomfortable choice: miss out on the fantastic opportunities and experiences, or attend at significant personal, physical cost. Festival and showcase organizers must go beyond minimum standards to listen to the needs of disabled artists and delegates. With planning time, care, and consideration, access requirements can often be met or accommodations found.

Because of my experience pulling out of a festival in 2019, Surf the Wave commissioned Second Hand Dance to research ways to better support artists with access needs. The first phase of research took place in 2020 when we conducted seven interviews with individuals across the cultural sector in United Kingdom including artists, festival directors, producers, directors of development agencies, choreographers, and chief executives. Five out of the seven people interviewed identified as disabled.

This research was a small start and needs a wider network of people to learn from. However, we have gathered key access considerations for producers, directors, and staff to think about when organising festivals and showcases. This starts with the initial planning and continues right through to evaluation, so my recommendations span the time before, during, and after a potential event.

Before the Event

For most people living with disabilities, planning is essential. Spontaneity does not go well with access needs. Provide participants with as much information about schedules, venues, and networking opportunities as far in advance as possible, which helps with travel planning and enables venues and delegates to find solutions to access requirements ahead of time.

Travelling as a disabled person may also require extra funding. In the United Kingdom (UK), we have Access To Work, a government grant that covers the access costs of working once reasonable adjustments (like support workers, taxis or interpreters) have been made by an employer. For travel abroad, a separate application needs to be made, which often need a letter of support from the festival or showcase. Not all artists will have Access To Work funding (or anything similar in their country), which is a complex conversation, but be aware that other applications may be necessary. It’s also worth considering whether you can financially support disabled delegates.

Know that accessibility comes in many forms, individuals’ needs can clash, and you can’t get it right for everyone every time. If this is new to you, consider paying disabled artists to consult on the planning and evaluation process.

Top Tips

• Be as clear as possible from the beginning with what access provision you can provide. If disabled people are welcome, tell us!
• Release schedules at least six weeks in advance, but ideally three to six months in advance.
• Think carefully about the scheduling and timing of networking events. Early morning and evening events are often more difficult for artists and delegates with invisible disabilities.
• Build rest times for both artists and delegates into the schedule to avoid disabled artists having to miss out.
• Ask everyone about access requirements at the point of booking, and be clear about how companion tickets for support workers can be booked.
• Clearly state what access you can provide: will shows be sign interpreted or audio described? Can you provide alternative seating?
• Ensure there is a contact person who can support anyone with a disability before, during, and after the festival.
• Provide information on the terrain around venues: are there cobblestone streets, hills, and/or narrow pavements?
• Consider if additional training is needed for staff Many companies in the UK and the US can provide disability awareness training. In the UK these include Ramps on the Moon and Graeae.

Consider developing Easy Read Guides or Visual Guides. These are guides that use easy words in short sentences, with pictures to help convey information. It’s important to work with someone who has experience writing these. They were originally developed to support learning disabled users, but they can be invaluable for people with many types of disability.

During the Event

Festivals and showcases can be busy environments. There are shows to see talks to attend, in addition to just grabbing a coffee with a colleague after a show or catching someone in the corridor. Regardless of whether your event is based in one building or split over a city, travel and finding your way somewhere new can be exhausting. For me, lying down for ten minutes before a show can support my body to reset and allow me to enjoy it.

If programming a disabled artist, consider their production schedule. Longer or staggered get-in times might be needed, which often conflict with the festival nature of programming multiple shows back-to-back.

Top Tips

• Provide quiet, comfortable, rest spaces at key venues.
• Provide pictures of seating at venues, and note any alternative options.
• Offer comfortable seating or lie-down options with mats and cushions during networking events or talks.
• Collate three trusted local taxi numbers.
• Ensure disabled artists and delegates have the name and contact details of someone in case there is a problem.
• Provide hard copies of the schedule or Easy Read guides for those that need them.

Our research and its recommendations are a starting point from which more can be done to understand and improve the accessibility of festivals and showcases.

After the Event

Encourage feedback from disabled artists and delegates. Have a conversation with them about what worked and what didn’t go so well. We are all on a learning curve to make a more inclusive society, so take responsibility for areas where provision was insufficient and where your festival can step up next time.

Our research and its recommendations are a starting point from which more can be done to understand and improve the accessibility of festivals and showcases. Our research focuses on in-person events, but he nature of festivals and showcases has changed since 2020 due to COVID-19, with hybrid options becoming more common. These offer some solutions and some additional barriers, including time zones and internet access.

Second Hand Dance is now working globally supporting the Assitej Executive Committee Access Committee in its thinking and planning. Having lived with invisible disability, and with festivals and showcases such an important part of my working life, I hope that event organizers take note and prioritize accessibility and inclusion in their agenda.