Creatives with Unseen Disabilities(CUD), a community-based project for creatives living non-apparent disabilites, chronic illnesses or those who are neurodiverse.
For 6 months WORM Pirate Bay hosted “Creatives with Unseen Disabilities” – a community based research project organised by Karina Dukalska and Kristin Langer. Karina and Kristin put together a group of 8-10 creative people with non-apparent disabilities, chronic illnesses or people who are neurodiverse. They came together to discuss intersectionality, the balance between self-care and work and their experience of disability in the challenging cultural sector. Together they created a community that could provide support and a space to talk about the difficulties of working in the creative industry, and the possible solutions to make it more accessible. With the theme Creative Crip Utopia Workspace the final show of CUD allowed people to come and dream about what an accessible art world could look like, while exploring the community CUD built !
We took the time to find out what facillitators Kristin Langer & Karina Dukalska took away from the residency:
What did you learn about the community that you wanted to build?
KD: I’ve learned a lot from all the wonderful people I have met over the past year. Some taught me specific crip language, some taught me concepts. Many people shared love and showered each other with care. It still leaves me a little speechless thinking that we were able to create a space for ourselves within the creative industry, outside the common or prevalent system. I’ve learned that it is possible to create a space that suits us, meets our access needs and makes us feel whole. I’ve learned that anything is possible, especially if it comes from a place of collective care.
One of your goals was to support each other during the highs and lows? What did you discover in this process? What new methods of support did you discover?
KL: I think we created a new normality during the sessions. Thanks to the Access Check-In we have learned to adapt the programme according to the needs. Here everyone could share what they needed to fully participate in the event. It became a ritual to use this method at the beginning of every session. From there we developed a non-verbal hand sign to indicate to each other when someone needs a break. I loved that everyone took part in the process. With a few helping hands, later on we were also able to digitally connect people to sessions who couldn’t be there in person.
KD: Yes, I love thinking back on how easy it was for us to find methods to communicate. Anytime someone came up with an idea, the whole group went along with it. Everyone was so supportive of one another. No questions asked. I know Kristin and I have created our own little system quite early on. If someone is not doing well on a particular day, they just send an emoji of a turtle. It just means “it’s a slow day, not today”, and that is all that is required. No need for explanations, or feeling bad about it. It’s just an off day, and we get back whenever the person feels ready. That’s all.
Your final show focused on making a Creative Crip Utopia Workspace. What did this workspace look like?
KL: We built up our Creative Crip Utopia Workspace in a wheelchair-accessible space. In the centre of the gallery space, people could sit. In a cosy corner with soft dimmed lights, we created possibilities to rest. There were beautiful artworks, presented with image descriptions, that people could interact with in different ways: For example, by hearing, seeing or feeling. People were invited to write answers about their access needs on an interactive post-it wall. On the wall were large card abstract shapes with three questions. We asked the visitors what their access needs are at the current moment and how they feel when their access needs are being met. And we invited everyone to dream with us what an accessible art world would look like to them. We and our guests stuck the answers with colourful post-its on the wall. Altogether it created an empowering artwork, which fitted well next to posters with ‘Crip’ definitions. In the space we also presented a wall with alternative CVs and access riders, a cosy audio corner and -yes- a movable bed. As food and drinks are access needs too, we offered non-alcoholic drinks and snacks at our free bar. We also offered our zine for free, capturing all that we had explored during the residency. If people wished to have a companion, access buddies walked and guided them through the exhibition, offering visual descriptions. Being aware that some of us and our guests belong to the risk group, we kept our distance and wore medical masks. The last aspect I would like to mention is that it was important to us that people could also participate from home. We offered interactive online tours on Instagram for everyone who couldn’t attend in person. If you’re curious to learn more about our Creative Crip Utopia Workspace, these recorded tours are available on our Instagram account creatives.unseen.disabilities.
In your final show, the bed was very central. You had a physical bed in the space, and there was also a group photo with participants around and on top of a bed. Why was bed a recurring theme in your expo?
KD: This was an idea that formed as some participants started dreaming of what we wanted in the show. We were aiming for comfort, pillows and softness. We were already using some foldable mattresses during our workshops throughout the year, and the need to lie down and rest was something many of us experienced at some point during the sessions. It seemed like an obvious item to include. Noli Kat, one of the participants, has previously created self-portraits in her bed, and it really took off from there. She organised a group photo session in her house, using that same bed. The concept kept growing. Pier van Wijk was our amazing carpenter who created a bed from scratch for the exhibition. NEON . TINK made a gorgeous tactile blanket and pillow to go with it. The bed needed to be transported by foot to WORM, so the bed was fitted with wheels and a rope to pull it along. Inspired by Frida Kahlo enjoying the opening of her first solo exhibitions from bed, Pier, Noli and Daphnis organised a bed parade to honour our crip artists and our limitless crip creative problem-solving.
What was your biggest takeaway from the residency?
KL: That you can never ask people often enough about their access needs – and yourself as well. I’ve learned that it is a process to work towards a more accessible future. As many chronic conditions flow and ebb in unpredictable ways, we shouldn’t be afraid to allow ourselves to adapt the design of spaces and programs in flexible ways. I still feel that it takes a lot of courage to experiment and to question familiar concepts. However, I take with me that it is possible to create something new, thanks to different perspectives and skills as well as energy resources being present in a community. On a personal level, the following conclusion from one session with a Socratic discussion had a huge impact on me:
“Show yourself to create a new normal – Don’t hide in normality […].”
I think the group has given many, me included, confidence to show themselves more.
During the residency you shared many resources. Which ones impacted you the most and why?
KL: “Crip Kinship” by Shayda Kafai – a book which explores the art activism of the Performance Project Sins invalid. It helps me to have more vocabulary and it inspires with its intersectional perspectives. It provides ideas and opportunities for action from disabled, queer people of colour to collectively advocate for their rights and for all people in creative ways.
KD: Yes, that’s a beautiful book! Definitely worth picking up. There are still so many books I have waiting for me to get through. Perhaps a less familiar resource that impacted me heavily, was a podcast by Sylvie Rosenkalt for BARTALK. I listened to it when it came out in December 2020, and it left me in tears. She ignited a spark in me that was too strong to ignore. In the podcast she dives into disability justice, collective care and crip creative problem-solving. I listened to it again recently, and it was just as impactful as the first time. I highly recommend it!
What do you hope the creative sector can take from the residency?
KL: We hope that institutions start to reflect on how programmes and spaces are designed. To start asking questions like: How accessible is a place, event or programme? Can visitors and students share their access needs, without having to disclose too much? Do we think of different perspectives of how a place can be perceived? Are we open to making adjustments? Does the gallery offer a space to sit down? Can we offer a calmer place to rest? We would hope that there is more awareness for reasonable adjustments.
Many of us face chronic conditions and necessary medical appointments are time and energy-consuming. For example, it can be difficult to manage an open call deadline with a short application time. Or people can’t join network events because of inaccessibility. Or drop out of arts education, as they are not able to continue studying without their access needs being met. We would like to see people working in the creative sector becoming more aware of different needs and realising that there is a need to involve disabled creatives.
KD: I would love to add to that, and mention recruiting more disabled people. Disabled people have such extensive skill sets that they acquired due to disability. Some examples are creative problem-solving, task management, and prioritising, to name a few. Without these skills we wouldn’t survive. Hire more disabled artists to help you find creative solutions, hire disabled artists to help you understand how to improve accessibility within your institution, hire disabled artists to be educators, guest speakers, role models, or whatever role they would like to do. Their disability isn’t your disadvantage. It’s your opportunity to better yourself and be more supportive of the diverse community around you.
What are the next steps in this project?
KD: We definitely want to continue, and want to get more people involved! We’re looking into what worked and what we would like to see change as we develop the project. We would like to continue having these sessions with guest speakers, but also have different events solely dedicated to meeting other disabled creatives. These meet-ups would allow people to chat, share their work and find people to collaborate with. It’s something we saw worked very well over the past few months, but we just didn’t have enough time designated for it. That’s my next focus to incorporate.
KL: Yes, we are finding new ways to continue the project. Firstly, we are looking for more funding opportunities, to make the project sustainable. It feels amazing that we built up our small CUD crew during the residency, and we would like to continue working together.
During the project we also got to know other disabled artists and organisations working on the same topic. Some of these invited us to share our work and talk about our project and community, which is very exciting! Our role is now not only organising but also discussing the topic of disability within the creative industry. I’m really looking forward to working further with these meaningful connections, both within the Netherlands and abroad.
Interviewer: Ife Carter & James Parnell