INTERVIEW WITH RESIDENTS KARINA DUKALSKA AND KRISTIN LANGER
Starting April 23rd, the WORM Pirate Bay will be hosting “Creatives with Unseen Disabilities” – a community based research project organised by Karina Dukalska and Kristin Langer. Karina and Kristin are putting together a group of 8-10 creative people with (partially) invisible disabilities, chronic illnesses or people who are neurodiverse. They will come together to discuss intersectionality, the balance between health and work and their experience of disability in the challenging cultural sector. The goal is to create 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.
Each session will begin with a group check-in, where participants could share their experiences (whether challenges or successes) and ideas on how to handle certain issues within the creative industry while living with a health limitation. The second part of the session will involve a different guest each time, who will help lead the discussion and put different topics in focus.
Kristin Langer is a researcher who focuses on the rights of persons with disabilities and gender equality. She is also a creative social worker, working on different art projects. As part of Generation Europe network, she loves to create accessible workshops on cultural participation as well as value-based education.
Karina Dukalska is a graphic designer and dance educator. She particularly enjoys working on projects that focus on cultural diversity and differences in perspective, especially when combined with the history of dance. Alongside her typographic work, she loves playing with translating movement and music into graphical forms.
We sat down with Kristin and Karina to learn a bit more about this project and its goals.
What was it that motivated you to pursue these topics?
KD: It was a combination of things: my personal journey; the lack of a community for people with unseen disabilities within the creative sector and the pandemic which truly brought out the neglect towards the disability community and people at high-risk. I tried finding a group for myself, but I couldn’t find one that’s not a grim support group where the only thing in common is the medical condition. I was looking for a group where there is a second uniting pillar, a shared industry, for example. I couldn’t find such a group, so I decided to make one.
KL: I have observed in myself that I am on a path that I would like to share with others about similar experiences. I couldn’t find the space where people share personal strategies related to disability and exchange on work projects. When Karina and I started talking, I was excited, because despite having different experiences we understood each other.
I wanted to ask you about the language. You use the term unseen disability. Could you discuss the term and the difference between invisible disability.
KD: The term unseen really emphasises that all disabilities are visible to those who are willing to see them. Invisible hints that something is hidden, or difficult to see, and described from a non-disabled perspective. It puts the emphasis on a person with a medical limitation. Whereas with the term unseen this is flipped and the stress is put on the perceiver. ‘Seeing’ a disability is acknowledging the successes and hardships that come with it, and the limitations formed by an ableist environment. We understand invisible is the predominantly used term, so we will sporadically use it too, but we have a strong preference for the term unseen.
This residency is open to people with invisible, partially invisible disabilities, chronic illnesses and people who are neurodiverse. The term disability is broad, and not limited to any cliché. Whether physical or not, all people living with any disability are welcome to apply. The amount of experience with a health limitation is also not paramount. The small group is a space for people to contribute in whatever way they can and feel comfortable with.
What challenges are presented to someone with an unseen disability in the cultural sector especially?
KL: One of the most difficult things is finding the balance between health, for instance going to medical treatments and taking care of yourself in challenging situations, and the culture industry with its expectations: for example dealing with deadlines and being in situations where it might be challenging to talk or open up about the disability.
KD: The creative industry is difficult to negotiate as it is and balancing that with health issues makes it even harder. A lot of people go through these hardships on their own, without knowing that there are other people around, facing similar problems. Even finding people and finding a community may be difficult because networking situations and venues within the creative industry are not always accessible, which puts people with disabilities at an even greater disadvantage.
This residency is going to include a collectivity of participants, what do you think is the value of working collectively?
KD: Definitely having all of these different perspectives and growing a collective knowledge, helping one another.
KL: Building a community and finding solutions together.
This is a two part question: What do you wish to achieve and learn during the residency; and also, what would you want participants to get out of this project?
KL: We want to grow a sustainable community that would be there also in the future. The first goal is to become a community so that we can connect with one another. We want the residency to be a place where people can grow and learn from one another. The goal is to have a community where we have a series of creative moments, when people can talk about both the visible and invisible natures of their disability. Also, to give a moment where people can think about their journey and with how they deal with it in certain situations. And to give support.
KD: To answer your question regarding what we would want the participants to get out of it, I really hope for them to find a network and a space to discuss intersectionality. In other words: each person has their unique background and story, which forms how, and to what extent, their experiences and difficulties shape their creative practices. By sharing these experiences we can build a sense of reassurance and support one another. And through that also find a sense of belonging, and hopefully through this networking, opportunities for collaboration.
KL: We hope that we will learn more about community building and collaboration and empowering each other in the process.
The last question – are there any thinkers or artists that you are inspired by for this project?
KL: When I think about this, then I don’t think about artists with famous names or people who are well-known, but about certain projects where people who have experience and know what they are talking about, can gather a community from the bottom-up and not only think together about how they can help one another but also think about how to use the power from each person to create something together.
I think about one collective based in Berlin, they are called “Die Neue Norm” (in German, the new norm) and they are creative people and also researchers working together and reflecting on how in society people talk in newspapers, and TV, and in all media about disability and how disability is presented.
KD: I agree, I also don’t have any thinkers or artists in mind, I am more inspired by the people out there doing things, the everyday people who are activists, who have a voice, who have the heart to go out and make a change. I look up to people like my childhood friend with a visible condition that would never take no for an answer. She just marched through life voicing her demands and seeing that as the absolute norm. She would not allow to be pushed around in any way.
I think for me one of the driving forces to really get up and start doing bigger things was having listened to Sylvie Rosenkalt’s Podcast for BARTALK. She discussed disability activism and care and I think it’s really worth listening to. And obviously, if people want to read more about these things, it’s really worth reading the books by Judith Heumann, “Disability Visibility” by Alice Wong or even watching Crip Camp on Netflix. It’s people like this who are my biggest motivators.
To follow the project on on Instagram click here.
Interviewer: Lara Parodi
Design: Karina Dukalska
Photography: Creatives with Unseen Disabilities