In this interview, Lily explains how Stopgap Dance’s approaches to accessibility reshape practice, broaden disabled artist representation, and underscore inclusive leadership, while also normalising disability in creative work.
Transcript
Mariana: Hi everyone, welcome to the DARCI podcast, the podcast on disability, accessibility and representation in the creative industries. My name is Mariana Lopez and I’m a professor in sound production and post-production at the University of York. And today I have the pleasure of welcoming Lily Norton. Lily is an autistic dance artist, performer, access consultant and audio describer. Their work reimagines access, not just as a way in, but as a creative, collaborative force that shapes how stories are told, experienced and shared in dance. As content and access artist with Stopgap Dance Company, Lily co-leads access strategy and creative development across live and digital projects, integrating Audio Description, relaxed performance and other inclusive practices into the work itself. They’re a performer and co-writer of the award-winning Lived Fiction, bringing live Audio Description into the heart of performance. Through consultancy rooted in principles of disability justice, Lilly works with arts organisations and artists to embed access and inclusion, providing creative solutions and training that help build more inclusive, equitable and just cultures. Their freelance Audio Description spans live and digital projects for a range of dance companies and arts organisations. Lily also serves as a trustee for South East Dance. Across all of their work, they combine lived experience with a commitment to transforming accessibility into a driver for artistic innovation. Outside of work, Lily enjoys open water swimming, live music and a variety of crafting hobbies. Lily, very, very welcome to the DARCI Podcast. How are you today?
Lily: Hi, yes, yeah, I’m good. Yeah, very good.
Mariana: Oh, it’s lovely to have you. And I thought we’ll just get into the questions so that our listeners can learn more about your work. You are a content and access artist at Stopgap Dance Company. And by the way, I love the title, Access Artist. That’s just such a such a great title. And I was wondering if you could tell us what Stopgap is for those who are not familiar with the company and what your role entails.
Lily: Yeah, of course. Yes. Yeah. Thank you about the title. I get a lot of interesting compliments and people intrigued about what it means. But yeah, Stopgap are a brilliant dance company and charity based in Surrey in the southeast of England. But we work across the country nationally and internationally. I’m working with deaf, disabled, neurodivergent and non-disabled people and we seek to change perceptions and we’re really committed to removing barriers to dance for everyone. And a little bit of history about us, we were founded in 1995, initially as a community dance project. And one of our first ever dancers called Chris Pavia, he joined in 1997 and he’s still working with Stopgap today as a resident choreographer and Chris is one of the first people with Down syndrome in the UK to make work for national touring. We were then established as a company and we were a repertoire company so it meant that choreographers came in and made work on us and then we began receiving core funding from the Arts Council and around 2012 made the shift into being a devising company, so making our own work. From there things got busy and amazing, there’s some sort of highlights, one of our works called Artificial Things was selected to be studied as part of GCSE Dance, was then also made into a film. We established Iris, which is an inclusive dance syllabus for young dancers. We welcomed new artists who trained with us through an apprentice scheme. We survived the pandemic.
Mariana: And it’s a highlight in itself. [both laugh]
Lily: Yes, exactly. And that really powered us into a new phase of work. And yeah, there’s a lot I could talk about, but each strand of our work, whether that’s performance or our youth and community programmes or our teacher artist training, it’s all working towards this mission of using dance as a movement for change. And we’re really interested in the creative power of a collective of intersectionally diverse group of bodies and minds. And ultimately, we want to make dance that’s inclusive and ambitious and really celebrates disabled artists. We aim to create work that’s excellent artistically because we’re still challenging a lot of assumptions that disabled dancers can’t make professional and high-quality work. But yeah, we’re also wanting our work to be as accessible to as many people as possible. We really want to showcase what’s possible when you work in this way. That’s kind of where my role starts to come in. Yeah, my role as content and access artist is fairly unique, I think. There are roles like Access Consultant or Access Coordinator that have become more common in recent years, but Access Artist reflects the embedded nature of my work. So, it sits within the creative process rather than alongside it. And it combines access provision, so my main form is Audio Description. I combine that with a lot of creative responsibilities and freedoms. It builds on this idea of the aesthetics of access, which is about giving accessibility real artistic weight and seeing it as a creative layer that shapes the work from the beginning rather than something added at the end. I’m incredibly lucky to have a full-time role with the company and be researching through practice these new ways that we can embed access within dance and make work more accessible to a wider audience. Yeah, and I still work across more functional areas of access too. And then the content part of my title reflects the work I do with our communications team, so supporting social media, our website, marketing materials. Yeah. Yeah, sorry, there’s a lot of words. [Lily laughs]
Mariana: That’s so interesting. And yeah, I love, yeah, I think that would kind of, I really liked about your role title is that, yeah, as you explained very clearly, it just brings, it just makes it clear that, you know, accessibility is a creative process and should be a creative process. So, it kind of moves us hopefully a little bit away from notions of this objectivity that areas like I call your description, I sometimes get really entangled in. So that’s really, really great to hear more details. And I was wondering how did you first get interested in dance and accessibility?
Lily: Yeah, yeah. And so I started dancing when I was really young. It was kind of that classic route of ballet tap modern dance from age three. And I, yeah, I loved it, especially sort of the structure and rigour of learning grades and having that clear sense of progress. But then, yeah, I started doing contemporary dance around when I was about 13, so that’s when something really clicked for me and I found a bit of, yeah, confidence and freedom that I hadn’t experienced before and dance became not just about technique but about expression and connection and I’ve always been on some kind of tangent with disability arts. So I started dancing with Stopgap as a teenager in their community company, which is called Troop. My mum is also a dance teacher for Stopgap and other disability-focused community organisations. So yeah, I’ve been, Yeah, it’s in the family, I guess. Yeah, so I was surrounded by disability arts long before I was diagnosed myself or had my own understanding of being disabled. And looking back, I feel really, yeah, really lucky to have had that early exposure to both to some incredible disabled artists and to Stopgap’s ethos. And it gave me such a strong foundation for thinking about inclusion as a creative strength. And it’s also taught me that there’s never just one right way to do something, whether that’s in dance or communication or in life in general. Yeah, and yeah, I think disabled artists are constantly inventing and adapting and rethinking form. And yeah, it’s made me a far more sort of collaborative and responsive and curious artist. But it meant that by the time I did identify as disabled, I already had these role models and a community that framed disability as something creative and political and powerful. I had various jobs with Stopgap after I left college. I did a bit of administrative work, a bit of project support. Then I went on to study dance at university. I felt very grateful for having worked with Stopgap. I felt very open-minded. And yeah, uni is where I became most interested in accessibility and in more of a… I don’t know if formal is the word, but my dissertation was focused on Audio Description for dance. And yeah, that came from a fascination with how to find language for movement, how to translate what’s essentially something very non-verbal into something verbal without losing its nuance or emotion. And I really enjoyed the sort of the analytical elements of my studies, so breaking down choreography, really trying to understand what a choreographer and their work and their dancers are communicating. Yeah, and I’ve always loved dance for its ability to communicate without words, but I became just as fascinated with the process of putting that communication back into words. [both laugh]Yeah, and so of course I soon learned that good Audio Description isn’t just a technical analysis exercise. It can be a creative act in itself. So, yeah, experimented a bit practically with that, playing with how description could enhance a performance and through my studies became a bit more aware of who within the dance industry or the the wider sort of arts and theatre industry was working in that way and who was pushing boundaries of form, Audio Description and yeah one of the companies was Quiplash. I don’t know if you’ve heard of them.
Mariana: Yeah we’ve interviewed them.
Lily: Yes amazing, so yeah they’re a brilliant queer disabled led organisation. So I did a bit of training with Amelia, who’s a blind artist, academic and drag king. And yeah, they really supported me in learning more about the fundamentals of Audio Description, but also learning more about queer and integrated approaches. Yeah, and that experience alongside my work with Stopgap, led me to where I am now. Yeah, yeah, and I do a lot of thinking about why I do this work, why I’m drawn to it. I think as an access provider you have to unlearn this feeling that you’re doing something great for someone else or you have to kind of de-centre yourself in this work. I do it for disabled communities because we deserve high quality, equitable, artistic access to arts and culture. And I think access work is a form of activism for me. It’s a way of challenging systems that decide who gets to be seen or heard or valued. And every time we centre access in a process where we’re kind of redistributing a bit of power, saying, you know, this space belongs to more than one kind of body or one kind of mind. Yeah, and I love how, yeah, creative it can be and finding these new ways for people to experience and express themselves and, yeah, thinking about new languages, new forms, new routes in. Yeah, that’s quite exciting. Exciting for me. Yeah.
Mariana: Great. And I always love it when people come to the podcast and they mention how influential other people that have been on the podcast are. So it’s just a reminder for the listeners that we did have Amelia Cavallo as a guest when we actually very, very early on when started the podcast, I’m a great follower of their work on Audio Description and theatre, so we encourage listeners to go back to the episode and listen. Loads of connections there, so it’s great to see the positive influence their work has had. Something I wanted to do now is focus a little bit on one of the latest productions that you’ve been working on, titled Lived Fiction, and we had the great opportunity to get to watch an extract at the DARCI conference where Stopgap Dance came and performed an extract and we got to experience the beautiful performance but also the Audio Description on it and I have to have to say like we all felt it was such a highlight of the event for us. I was delighted that we were able to have this contribution and I was really moved by how beautiful it was and we have written a little bit about on our website about it but also for listeners as well. The last, the previous, one of the previous episodes that was focused on the DARCI conference [?? ADD LINK} actually that performance came up quite a few times as colleagues highlights definitely something to listen out for. But I was wondering if you could tell us a little bit about what is Lived Fiction and why does it matter?
Lily: Of course, yeah. Thank you very much for your kind words. I had such a great time at the DARCI conference and also a slight side note is that it’s inspired me to get back into academia a bit and I think I might be applying for a master’s next year.
Mariana: Oh, wonderful! Oh, that’s great to know.
Lily: Yes, yeah. So, yeah, as I mentioned earlier, we transitioned from a repertoire company into a devising company and Live Fiction is the third major indoor work we’ve made. And it’s a work that blends our inclusive contemporary choreography with creative captioning, embedded Audio Description and it’s held as a relaxed performance. All of that access is standard across every single show. That was a really conscious decision for us. We didn’t want deaf or disabled audiences to have to hunt down a single accessible performance or risk missing out because we recognised that although we’d made so much progress diversifying who was on stage and who was performing in our work, our audiences didn’t necessarily reflect that diversity. So, embedding access was part of taking responsibility for that imbalance. And yeah, the creation process for Live Fiction spanned nearly two years, which is quite unheard of for a lot of dance work. [both laugh] But it was because we wanted to be really intentional with having breaks for reflection and research and for processing ideas as a company.
Mariana: Yeah.
Lily: Yeah, so we began with extended research and development where our choreographer Lucy Bennett really started with this idea of letting the art and the access sort of sit and have a bit of a conversation in the studio. So yeah we played a lot with and experimented a lot with text and with description and yeah whilst creating we were exploring things like what happens when Audio Description is is treated like another performer in the space, or how can our relaxed atmosphere shape what we’re doing and shape our scenes rather than just be something that’s considered part of the front of house experience. Yeah, and we worked really closely with a lot of consultants, and that feedback loop was really important for us. So particularly when we were working with Audio Description, we worked with a lot of blind and visually impaired audiences and creatives and that gave us a lot of different perspectives on description for dance because we really didn’t want to just assume what people wanted. Some people really loved the more poetic description and that more poetic direction with our text, whereas other people, they really just wanted to know who’s on stage, what they’re doing, what they doing right now? [she laughs]Yeah, so it was a process that went through a lot of iterations and a lot of, yeah, we had a lot of focus groups involved and there was a lot of things we had to think about alongside working creatively. There was this big surrounding, I guess, sort of more traditional, functional access to consider, like, testing our caption readability under different lighting or making sure our script was balanced between being really clear but also poetic and things around sound design that supported the Audio Description without competing with it. Yeah, but overall, the work really draws on the artists that are part of it. And some of the performers have been with the company for a long, long time. And yeah, it draws out a lot of these personal stories. And one of the sort of concepts in the beginning that we were thinking about is who are we when we’re on stage and when we’re performing? And there came a lot of quite tender insights from everyone. So there’s some of the performers create this sort of really rich inner world where they’re a different character and that came out in some of the scenes. Yeah, and then there’s other moments where, for example, The excerpt that we showed at the DARCI conference was a solo from Nadenh, who’s one of our wheelchair dancers. I guess it’s also kind of a duet because I’m on stage with Nadenh describing him. And that description emerged from me really wanting to think about the mechanics of Nadenh as a wheelchair dancer and sort of give a bit of an insight into this technique that he’s developed over decades. Yeah, and we premiered the work in Dublin because another dimension to the show was that we were part of a research project. Yeah, it has quite a long title, but I will say it. [both laugh]
Mariana: Go for it.
Lily: The project is called ‘Dancing, protecting the right to culture of persons with disabilities and enhancing cultural diversity through European law’. Quite a mouthful.
Mariana: They didn’t go for short and snappy, I believe. [she laughs]
Lily: No, they didn’t. But I feel like that’s research projects sometimes. [both laugh] So that was led by Delia Ferry, who’s a professor of law at Maynooth University. But essentially that research alongside funding which enabled us to make the work really, it brought another dimension to our work and there was, yeah, also enabled us to hold more focus groups and contribute to, yeah, that important work around, yeah, protecting the right to culture. Yeah, and then, yeah, we’ve been touring the work for, it have been over a year now.
Mariana: Oh!
Lily: We’ve been to some really amazing places. Earlier this year, we got to go to Singapore, which was wild.
Mariana: Nice.
Lily: It was so fun. And got to tour to Switzerland. And even with a lot of extensive planning with this work, each sort of venue and each audience teaches us a lot. So we’ve had to learn a huge amount about making access adaptable and also quite resilient for different contexts. So we’ve also had some wonderful conversations about translating embedded Audio Description into other languages. So far it’s been translated into German and Italian. And that’s both the Audio Description and the captioning as well. And yeah, so there’s been some fascinating sort of conversations about, yeah, in English we mean a certain thing, but then they don’t always have the same words for it. And just trying to find that, yeah, to reflect the nuance of the script.
Mariana: And the length as well that it takes in different languages, the time it takes to say the same thing.
Lily: Yes, yeah, definitely. And yeah, something we’ve thought about is if we ever tour to somewhere where they… I don’t know what the word for it, but like, for example, some places in Asia, thinking about our creative captioning, how it might not necessarily sit on the same sort of screen or the same sort of format. So yeah, that’s been a bit of a puzzle to think about, but it’s…
Mariana: A fascinating puzzle.
Lily: Yes, definitely! [both laugh] Yeah, we’ve had a lot of great reviews for the work and it’s been recognised for some awards, which is super cool. But yeah, I think most importantly for me, the direct feedback from audiences has been amazing. We often hear how people feel quite held and recognised and a sense of belonging in the theatre. That’s meant quite a lot, particularly from some blind people who haven’t necessarily thought dance is something for them or haven’t thought that they can come along to a dance performance and enjoy it. Yeah, so it’s in some part helping that shift that perception of what access is and what it can be when it’s artistically integrated. Yeah, for me, the work is a lot about experimentation and storytelling. Yeah.
Mariana: Yeah, absolutely. And we wrote a little bit about this in our blog post on the conference, but yeah… I felt it was because we had just for context for listeners. We had at the conference, a section that was supposed to be a duet that was performed as a solo, but because you described the dancer that wasn’t there, it was just in a way… it was a really great example of how effective it was because I could definitely, I’m a sighted person, but I could imagine the person that wasn’t there in a really, really powerful way and I was talking after the performance with someone else and they were saying, well, actually, it’s a good thing that we got that demonstration of someone that is not there, but it’s being described in their movements. And it was such a powerful, powerful moving moment. And I am really glad that you’ve been having a great level of success with the performance, because it was evident even from watching that short extract that this was really high quality work. So it’s really great to hear that you’ve been touring the world and getting this wonderful feedback. But also it seems like also it’s opened up doors to think about how to adapt the piece and different accessibility challenges in different contexts. So this is really, really good. And if people want to watch it, I mean, this episode is coming out in January 2026. So can people watch the performance in 2026 somewhere? Can they catch it somewhere?
Lily: Yes, I’m just racking my brains. I know we are somewhere. My ability for date recall is not great. [both laugh]
Mariana: Oh, that’s fine. So, where can they find the information? So, where can people find the information?
Lily: Yeah, so if you want to have a look, see where we’re touring to, if you visit https://www.stopgapdance.com/production/lived-fiction/ or if you just head to our website, there’ll be a lot of info there. Yeah, we also update on our social media and things like that. Yeah, we’ve got some UK dates in the spring, I think.
Mariana: Oh, perfect.
Lily: Yeah.
Mariana: Perfect. So we know that our listeners will be going to the website to check the performance. I want to go back to kind of maybe a more general question. I’ve been reading that you have worked both across digital and live productions. And I was wondering if you could tell us a bit about how the work on accessibility might be different depending on the format?
Lily: Definitely. Yeah, so I think it definitely looks different depending on whether you’re working on digital or live. But I think for us, the core principle stays the same. So access needs to be considered from the very start. If you bring it in too late, you end up often firefighting, then creating something that feels genuinely integrated. It can depend on the outcome of the project and its format. So I’ve got a couple of examples I can sort of talk a bit about. We, yeah, with something like we have a project called Home Practice, which was Stopgap’s series of online classes, which were available on YouTube, and they were designed for learning at home during the lockdown. So the outcome for that was often educational or instructional and informational. So I don’t know if informational is a word, but we’re going with it. [both laugh] We had to think about clarity and language and how the videos were filmed and structured. But we also had to think about what content was more suited to an audio described class, for example. Or, we thought that the class most suitable for blind or visually impaired people tended to be improvisation based ones, but we then knew from experience and from consultation that not all blind or visually impaired dancers or learners wanted in improvisation. They also wanted phrases and technique. And then, for example, we knew that classes with lots of speaking weren’t that accessible to deaf folks if they needed to follow captions all the time or if they needed to follow the interpreter in our BSL session. So we created classes that were a lot more visual. And then we also had to think about how people might be following along without maybe being able to see the screen clearly or maybe watching from their phone or maybe they were in a living room with limited space. So, yeah, the access became very instructional and supportive for our audience, which is quite different, I guess, from creative work when sometimes there’s a bit more room for artistic interpretation. So, yeah, there was, for example, we recently made a dance film called Fierce Grace. Access there was a whole other consideration with a lot more room for creative decisions and an experimental approach. I think digital work has quite a technical workflow where every creative decision affects every access decision. For example, if the the editor adjusts a cut that might change the timing of the Audio Description, which then impacts embedded captions. It’s not just a one-way flow, because we’re working with access from the beginning. For example, sometimes our captioner will say, “That Audio Description there is a bit too dense and the text is becoming unreadable at that speed, so it will loop back to me trying to rewrite the Audio Description, which sometimes then loops back to me asking the editor if we can open up a few frames, like is there a breathing room?
Mariana: [both laugh] A bit more time! A bit more time!
Lily: Exactly, yeah. It’s like choreography, but for video timelines. So I think, yeah, with digital you’ve got to be really smart with your workflows and sometimes have to limit the number of edits because of those ripple effects. And yeah, sometimes project managers or artists aren’t always aware of those knock-ons. So, yeah, sometimes my job ends up being a bit of discussing around why planning access saves everyone time and money and a few headaches. Yeah, which, yeah, and I guess it’s not that different from some of those workflows with live work. There can be knock-on effects for sure, but yeah, in live work, a lot of those decisions can sometimes be made and refined in the room, which can be a bit more efficient or collaborative. Yeah, with live work, there’s that live element to consider. Like, we’re working with, for example, in Lived Fiction, we’re working with unpredictability, we’re working with bodies and mobility equipment that doesn’t always do the same thing over and over again in the exact same way or timing. So as an audio describer, that becomes a really fun interaction and moment for me to play with my timing or delivery or have to slow down or pause if we need to. But if you’re working with film, for example, you can know sort of down to the second how much space you have for like the line of script. And this is perhaps, I don’t know, a bit of a generalisation, but sometimes maybe live work can give audiences a bit more agency, so they can maybe look where they want or shift their focus or pick up on sensory details in the room or choose how to engage. And I think digital work can sometimes give you, the creator or the artist, a bit more control over what they see or hear. And things, yeah, so like the frames you use or the sound levels or caption placement is quite predetermined. And yeah, also sensory worlds can be very different. That’s, yeah, that’s also something to consider where, where people are when they’re experiencing something. In a live context, you have a bit more control over an atmosphere or environment. To an extent, we do also tour work outdoors, in towns and cities.
Mariana: Yeah. [both laugh]
Lily: You don’t always have a lot of control there. Yeah, but yeah, then digital, someone could be experiencing it from anywhere. I think I remember you talking a bit about that when you were talking about Enhancing Audio Description and that importance of mixing sound for people’s TVs or living rooms, I think.
Mariana: Yeah, absolutely. And I think people’s audio systems can be so different, right? If you’re depending a lot on audio, you might have, you know, someone at home that has a really sophisticated setup or really great headphones, or you might have someone that is, you know, listening to things over laptop loudspeakers that have their challenges. So yeah, absolutely. Yeah. And I like kind of that reflection, kind of what what is controllable and what you need to let go of. I guess that’s really, really interesting. But as well, you spoke before about the relaxed nature of, for example, Lived Fiction that allows, I guess I was just kind of imagining that people can, I guess, move and go to another part of the audience area and look at the captions from a different place or listen from a different position. So that just came to mind as I was listening.
Lily: Yeah, and something we try when we work, yeah, we work with venues a lot to think about those different ways people can maybe engage. So we try and have a relay of like a video feed out into the into the foyer if people want to go and watch it from out there. Yeah, yeah.
Mariana: Yeah, because sometimes performances are relaxed, but that doesn’t mean that people automatically feel like they want to, you know, move in front of everyone.[both laugh]
Lily: Yeah, it’s so interesting, yeah, working with relaxed performance, and you can let people know as much as possible, like, this is what you can do, and still, a lot of those conventions of of theatre are so ingrained and we’re so worried about sort of getting in someone else’s way or yeah, but part of what we did to try and alleviate a bit of that is there’s some places where we model it ourselves as performers. So we’ll either exit off stage or exit in the auditorium, sort of hang out a bit. We, before the show starts, all of the dancers, Most of the performers are in the auditorium chatting to the audience and there’s this real soft start. We’ve also sort of written in to the script places where we say, “Oh, this is going to get loud in this next bit, you know, if that isn’t quite for you today, it’s absolutely okay to leave.” And give those sort of times where people might know, oh maybe this is a chance for me to go but yeah there’s still a lot of… even like the architecture of a theatre you’re all sort of squished in a seat and like you’re all in a line and it’s hard to sort of shimmy past someone but yes.
Mariana: Yeah. And even I always think you know when I look at photographs of events as well, we all like it if people were really clustered and you took a photo and everything looked really packed but I think how much I dislike that as an audience member when there’s people all around me. I kind of I much rather sit in a corner and have my space. So I was I often think about when I look at the photos how we kind of think about our own behaviour differently when we are in the audience and when we are actually in control of the situation and we know what’s going to happen next etc. So really really interesting. And something I came across while I was looking into your work is some blog posts you wrote a while back about the importance of a greater understanding and inclusion of autistic people as well as better representation. And I was wondering if you could tell us a little bit about this, any challenges you have identified, but also positive steps forward people can take as individuals, but also organisations, things organisations can do.
Lily: Yes, yeah, thank you. It’s always so like… when I saw this question, I went back and sort of reread some of those. It’s always interesting rereading your past writing. And I yeah, I think I really enjoyed that three years ago, I was like happily telling people what for in a blog. But yeah, I definitely I know, I’ve sort of grown a lot in my understanding of autism and neurodivergence. I think in Stopgap we often find ourselves repeating points that are still very relevant. And yeah, though there are certainly things I understand now about autism with a lot more research. I think those blogs are also still very relevant. I mean, if we look at how, for example, the current political administration in the US has recently been talking about autism, describing it as a preventable epidemic caused by environmental factors like vaccines or the claim that a common painkiller is a cause. You can’t see it right now, but I’m eye rolling so hard. [both laugh]
Mariana: Yeah, yeah, me too.
Lily: But yeah, we still see how autism is still so misunderstood and even like demonized really. And autism, it’s not a disease. It describes the way some people communicate and experience the world around them. And yeah, I really like using from the autistic self-advocacy network who sort of say, you know, there’s no one way to be autistic. Some autistic people can speak, some people need to communicate in other ways. Some people have intellectual disabilities, some people don’t. Some people need a lot of help in their day-to-day lives and some people only need a little bit. And all of these people are autistic because there’s no right or wrong way to be autistic. And in these blogs, I tried to express that sort of infinite diversity and reflect on how we’ve got to move beyond stereotypical presentations of autism, that of emerging media. And yeah, some of the challenges we identified were those expectations around what autism is, how we’re assumed to be. I’d written in one of the blogs about how as a later diagnosed autistic person that throughout my life I’ve been labelled in different ways, so labelled as fussy or difficult or strange and that a lot of my behaviours or actions have been misinterpreted. And that led to a lot of internalisation and made me feel like, well, there’s something really wrong with me. Yeah, there’s this deep friction, I think, in how we’re expected to behave and communicate and socialise, which often counteracts with the ways we actually comfortably and safely exist and express ourselves. Yeah, and yeah, in these blogs, I also chatted and spoke to autistic friends and colleagues and we reflected on things like diagnosis and how receiving that impacted our lives. Yeah, but one thing since then that I’ve reflected on is that of the people I spoke to, we were all white people and I’ve since reflected a lot on having a greater intersectional understanding. So for example, how racialized people experience autism and have done work on increasing the diversity of voices I listen to and learn from. I think zooming out a bit more to some of those systemic barriers. In, I think it was in 2024, there was a research report supported by Autistica, who are the UK’s leading autism research charity. And yeah, that it, it gathered this research around employment and talked about how there’s only around three in ten working age autistic people who are employed and that even when people do get jobs they’re often underpaid or overqualified for the roles they’re in and a lot of that isn’t about capability, it’s a lot about the way recruitment and workplaces are set up. So interviews are often a really difficult process for people. Things like noisy, sensory, overwhelming working environments or processes that force people to disclose and have to continually advocate for adjustments. Yeah, that review showed that a big proportion of autistic people in work don’t disclose because they don’t feel safe, which means they then often don’t get the support they actually need. It’s a bit of a cycle.
Mariana: Yeah.
Lily: And I think working at Stopgap can sometimes lull me into a bit of a false sense of security because we live and breathe like this ethos of access and care. But yeah, most autistic people don’t land in environments like that, unfortunately. But yeah, there’s loads that organizations can do. And also these things apply to a lot of neurodivergent people. And spoiler, are also beneficial for everyone. [Mariana laughs] Yeah, so it’s definitely thinking of like sort of dropping that one size fits all mindset. So support looks different for different people. Some people need structure, some people need flexibility. Some people need quiet, some people need movement and it’s always best to ask and not assume. I think it’s important to build inclusion into a culture and not just a checklist. So you can’t just go to one training session and call it a day. [both laugh] It’s much more of an ethos and yeah there’s a lot around creating neuroaffirming recruitment, so, things like clear job descriptions, having options besides just panel interviews, making sure you send questions to people, things like that. And yeah, letting people show their skills rather than just a bit of a social performance. Which I think everyone would benefit from.
Mariana: Yeah, absolutely.
Lily: And I think there’s a lot to be done around normalizing adjustments. So preempting people’s needs instead of just waiting for a challenge or a difficulty or waiting for someone to struggle to make an adjustment. And yeah, it can be challenging to not have to justify every single accommodation that someone might need. Yeah, and I think there’s a lot to be done in valuing autistic strengths. So things like deep focus or pattern recognition, dedication, like all of those traits are huge assets and can be recognised as strengths, but then also shouldn’t be taken advantage of. It’s, yeah, it’s been sometimes my experience that some of these traits can be exploited and people get overworked and burnt out. And also, yeah, it makes me think a lot about capitalism and productivity. And things like that.
Mariana: It’s always capitalism. [both laugh] It always comes back.
Lily: Always comes back.
Mariana: We should change the name of the broadcast.
Lily: Yeah. [Lily laughs]Yeah, but yeah. And often, I think with a lot of autistic people, despite genuinely being very productive members of a team, it doesn’t always translate into a career progression or job security. So I think there’s something there in supporting people to progress, whether that’s through mentoring or networks or leadership pathways for disabled and neurodivergent people. Yeah, and I think, yeah, just one positive step forward is is recognizing neurodiversity as part of human diversity and understanding that, you know, this is not some temporary phase in society. Neurodiversity is not a fad. I’m really hoping, fingers crossed, we’re not going backwards in coming years, but yeah, we’re definitely continually understanding more about autism and that’s what autistic people need rather than, I don’t know, thinking about the causes of autism, which we don’t know. It’s more that people want research into better support, better understanding and more acceptance. Yeah.
Mariana: Yeah. Yeah, and what you’ve been talking about, about kind of listening and thinking about the individuality of the experience, kind of really resonated with our previous guest, Jessie Parrott, that also talked about the importance of people, not relying on the one person they met, the one disabled person they worked with, for example, and then just thinking it applies equally to everyone, that there will be no difference. So, it’s really, really close. But also, as I was listening to you, it also occurred to me that I’ve seen circumstances where someone shares a challenge, maybe someone with ADHD or autistic shares a challenge and then you have the other person responding, well, I sometimes, that also happens sometimes and you’re thinking, oh God, please stop, please stop.
Lily: Yeah, yeah. It’s, yeah, you hear a lot like, oh, everyone’s just a bit autistic. Oh, everyone’s a bit ADHD and it’s like, oh, come on. Yeah. Like, yeah.
Mariana: It’s like, please, please stop talking. Yeah. Thank you so much. That was really, really interesting. And now moving on to the future. So, are there any exciting future projects you can tell us about?
Lily: Yes, yeah, yeah, in terms of what’s coming up, there’s, yeah, there’s a lot I’m really excited about. Yeah, first up, we’ve just opened booking for Kaleidoscope, which is Stopgap’s new online workshop series, all about creative access in dance and performance. It is a seven session programme where artists and organisations or producers can learn about things like creative captioning or relaxed performance and Audio Description and things like embedding access into your artistic process from the very beginning. I have been quietly squirrelling away working on this for months and I have been managing the project, which is a really big and energising step for me in my work. It’s been a lot of fun. And that, yeah, that begins in January.
Mariana: Oh, cool.
Lily: So, if people are interested, they can head to our website for a closer look. We’ve also got some really cool guest leaders too. So, we have Ben Glover, who is a deaf video designer and creative captioner, who we collaborated with on Lived Fiction. We’ve got Quiplash, …
Mariana: Oh, cool!
Lily: … who specialise in queer, quip-led performance and integrated AD. Yeah, that’s who I trained with. So I know their sessions are as joyful as they are practical. And from Tourettes Hero, we have Dr. Will Rennell, who’s head of research there, and artist and co-founder Jess Thom, who, yeah, bring this incredible mix of lived experience and rigour and imagination to everything they do. Basically I just curated people I admire and want to listen to. [both laugh] Then in terms of artistic work, we’ll be continuing to tour Lived Fiction and from spring we’ll be reworking and remounting our new outdoor work which is called RO-TES. And it’s a piece choreographed by senior artist Nadan, who’s also a dancer in the Fiction. Yeah, it premiered this year and it had a really beautiful response. It’s an outdoor work that celebrates community and connection and connects to Nadan’s Cambodian heritage. And he also has this amazing upcycled wheelchair that he uses for loads of innovative choreography. Like he gets up in the air at some points, it’s real cool. [both laugh] Yeah, and I wrote and voiced the integrated Audio Description for the work. So yeah, I’m really eager to rework it for future touring because we’ve done a lot of consultation with with blind audience members this year. And it’s something new for us to integrate Audio Description in outdoor work specifically. So there’s been new challenges there. Yeah, having to contend with the wind blowing the sound direction completely the other way, all of those sorts of things. Yeah, another exciting dimension or Stopgaps work is, yeah, I’m really excited by our Future Leaders Program…
Mariana: Okay.
Lily: … which is an initiative to develop and nurture disabled and neurodivergent leadership within, both within the organisation and the wider art sector. So it’s everything from mentorship and skills development to creating space for people to lead in the ways that suit their bodies and brains and lived experience. And yeah, there’s a real energy around it at the moment. And yeah, our two new future leaders have settled in recently and yeah, they bring a lot of great work with them. Yeah, and then in my independent work, and I know this episode will come out post Christmas, but this Christmas I’m audio describing a Protein Dance, I have a children’s version of the Magic Flute, which is an adaptation of the opera that’s blended with dance theatre. It’ll be my first time describing a piece that crosses opera and narrative theatre and choreography for children. So, yeah, that’s a fun learning curve and a really joyful challenge. Yeah, that’s some of the…
Mariana: Well, that’s this year. [both laug]
Lily: Yeah, I know. And that’s just like, that’s just the start of the year next year. So yeah.
Mariana: Yeah, that sounds great. And it’s, you know, I really love that the word joy came through so many times ‘cause we discussed joy as a main theme with Jessie last month. So really, really great to hear that this has naturally come up in this episode. And I have one last question that we ask everyone qnd it’s what are your hopes for the future of accessibility and representation in the creative industries?
Lily: Yes. Yes. I think so first and foremost, I really I really want to see systemic inequalities addressed and we need the structures around us. So that’s like funding, education, welfare, access to work. It needs to catch up with the brilliance and ambition of disabled artists. I’d really love a future where talented disabled people can work and lead and create without, yeah, without constantly having to fight the system before we even get to the studio. I’d love to see disabled and neurodivergent leadership become the norm. The representation of disabled people in the creative industries is way below the nearly quarter of the population in the UK. And we yeah, we talk a lot about representation on stage, but yeah, leadership off stage can really help shift culture. And yeah, when disabled people lead, the work changes, the audiences change and that whole ecosystem shifts. And yeah, maybe this maybe sounds idealistic, but I hope that…
Mariana: We like idealistic, you’re fine.
Lily: Thank you. [both laugh]
Mariana: We should, we should.
Lily: Yeah, but yeah, I kind of hope that one day the word representation becomes a bit obsolete, you know. Not because it stops mattering, but because it becomes so normalised that we’re no longer congratulating ourselves for including disabled artists. We’re just working together. Yeah, so yeah, I really wanna see stages and screens and studios, rehearsal rooms that, yeah, genuinely reflect the world we live in. I’d also love to see access as a co-creative practice everywhere, something that artists collaborate on and yeah, work with Stopgap has shown me how transformative it can be when access leads. Yeah, thanks to, also thanks to the DARCI Conference, I recently also been able to learn a bit more about what other areas such as, you know, arts and heritage sector are doing around collaborative Audio Description practices. There was so much I learned about what museums are doing and the sensory museum and yeah, is sparked quite a lot of excitement about where Audio Description for dance could go next. So yeah, I’m interested in collaborations that push that practice forward and move it away from just translating movement. Yeah, I hope that disabled artists aren’t exceptionalised. Again, I don’t know if that’s a word.
Mariana: I know what you mean.
Lily: I hope that we’re not just like an inspirational special project, but you know, we’re really part of the fabric of the creative industries. Yeah, and that our contributions are treated with the same seriousness and complexity and curiosity as like any other artist are. Yeah, that’s a lot of…
Mariana: And payment as well, payment. [both laugh]
Lily: Oh yes, oh yes, payment. Oh yes! It all comes back to capitalism. [both laugh]
Mariana: Yeah, but it kind of made me think when you said kind of this inspirational stories that sometimes people don’t, you know, I have heard a lot of things… well, this person had a great experience. So, you know, it’s okay that we didn’t pay them. I’m like, no, no, it’s not okay. Actually, you have to pay people.
Lily: Yeah, definitely. In access work is so important that you’re not just getting disabled people’s expertise for free, like that you’re yeah, compensating people for their time and their knowledge. And yeah, like, also something I found is that you’re not just relying on disabled people in an organisation to do that labour for you as well, like that you’re also learning yourself and you’re also doing that work and not relying on the same people to sort of uphold what you’re doing.
Mariana: Yeah. So, some lovely hopes for the future. It’s been such an interesting episode. I’ve really enjoyed kind of hearing about your history with Stopgap Dance. I didn’t know it kind of spanned throughout such a long period of time of you being engaged with the company in so many different ways. And it’s kind of evident that it has been so transformative to your practice, but that also you have transformed the practice of the company through your contributions. So thank you so much for agreeing to join us today and for sharing all your knowledge and insights on the field. It’s been a real pleasure. Oh no, thank you.
Lily: Thank you so much for having me. Yeah, it’s been really nice to talk about Stopgap’s work and what I’ve done. We often joke that people stay with Stopgap forever, but I think it’s because you’re given so much space and room to explore what you’re interested in. And that, yeah, that works great for me because there’s loads of stuff that I’m interested in. So, yeah. Yeah. Thank you for having me.
Mariana: Thank you so much!
Mariana: Thank you so much, everyone, for tuning in. This has been another great episode of our DARCI podcast. And don’t forget to revisit previous episodes for more insights. We will be back next month with a new episode and a new exciting opportunity to reflect on disability, accessibility and representation. Thank you very much.