Author: Anna Romandash
The journey of independent inclusive art initiatives in Ukraine, spearheaded by figures like Iryna Lysenko, a film producer, and Vladyslav Berkovskyi, the executive director of the Ukrainian Cultural Fund, is one to get inspired. Despite challenges posed by the full-scale war, their efforts continue to break down barriers and empower children with disabilities. Collaborative endeavours between organisations and individuals reflect a collective commitment to creating a more inclusive society, where culture is accessible to all.
Shooting with children with disabilities, in Silence, camera, and us – © Iryna Lysenko
“It is amazing to watch how children change and transform through their interaction with art,” says Iryna, “You get to see them grow and become more confident. It is crucial to spend more time with these kids and teach them about different opportunities and ways to realise themselves.”
Iryna Lysenko is a producer in the film industry. From Kyiv, Ukraine, she is also the founder of the NGO Let’s grow healthy, and the mother of a child with a disability.
Raising a daughter with a hearing disability made Iryna realise the many barriers that exist for people with disabilities. In Ukraine, there are at least 70.000 people with hearing disability–although the real number may be much higher. Often, these people are deprived of their basic rights–such as access to quality education or work, the integration of people with disabilities into social and professional activities being very weak.
Another issue is the lack of accessible art for people with hearing and other disabilities–art and multimedia works are rarely barrier-free, and there is little representation of disability in cinema or other creative industries.
Building on this observation, Iryna and her husband embarked on a journey to make art accessible to all–and to use it to make disability more visible.
“We made a few movies about children with disabilities in Ukraine,” says Iryna, “It is a unique case when the actors are children with disabilities, so they basically play themselves,” she adds. “With our filmmaking work, we’re educating, giving people with disability space in the arts, and helping them feel connected to the bigger community.”
Building an inclusive community through art
“When my husband and I learned of our daughter’s disability, we didn’t have a close circle that had a similar experience, so we built one for ourselves. We sought out parents whose children also had disabilities, and we founded an NGO to help the kids,” Iryna points out when explaining the origins of Let’s grow healthy.
The team focused on children with hearing disabilities, teaching them how to talk. The NGO did rehabilitation projects, educational activities, and also worked a lot with parents–so they knew how to best engage with their kids and help them develop their capacities.
Both Iryna and her husband work in the cinema industry. Iryna is involved with DocuDays documentary festival where she’s handling subtitles for people with disabilities–in order for them to experience the diversity of voices in different pieces of art. Iryna’s husband is a filmmaker. Their background made them turn toward art as a tool to integrate children with disabilities–as well as to shed light on inclusion through the movies they are creating together.
“This is how our first art initiative started in 2019,” Iryna says, “Back then, we organised an inclusive theatre project where children with disabilities as well as other kids were actors. We saw how being involved in arts gave kids lots of confidence and made them feel engaged–so we continued with this work ever since.”
Iryna’s NGO followed up with training and visits to movie sets, teaching children with disabilities how to make films themselves. Kids produced scripts, edited, and acted too–with Iryna and her team shooting a documentary about that experience.
“We were finishing another movie right before the full-scale invasion happened,” Iryna says, “The war prevented us from releasing it, but now that we’re back in Kyiv, we’re also back to our pre-war work. With our upcoming movie and other art projects, we want to feature more people with disabilities on movie screens–so there is more visibility for disability among Ukrainians. Kids need to see people with disability in movies too, so they can relate to the characters and see that they are not alone.”
For Iryna, art is about empowerment and making children with disabilities fulfill their potential. When they get to the movie set and work with professional actors, they realise that disability is not a barrier for doing what they want–and feel more integrated and capable to achieve their dreams.
“Children are very eager to participate, and in some ways, this is like rehabilitation because it helps them get integrated,” Iryna says, “It’s also about creating opportunities–and promoting greater inclusion, especially for those who didn’t get a lot of opportunities growing up. For example, my daughter can speak, and she also knows sign language. Whenever we visit a supermarket, she always goes to the non-hearing cashiers so she can communicate with them–because many of them didn’t get the same opportunities as her in learning. Now, there are more possibilities for people with disabilities, and we hope that with the movies that we make, there will be greater awareness and greater support for inclusion and barrier-free education and art.”
The full-scale war made it more difficult for Iryna’s NGO to finance its projects–as there are fewer grants and support for art activities. However, the team continues to look for external funding to finalise the feature film and to do more inclusive art initiatives.
The next step for the team is a project with the Ukrainian soldiers, among which is Iryna’s husband. The team wants to connect veterans with children with disabilities, so they can help each other and share their experiences, especially those soldiers who have recently become disabled. As Iryna puts it, these projects can combine psychological projects and art rehabilitation by empowering those involved.
Shooting with children with disabilities, in Silence, camera, and us – © Iryna Lysenko
The State and inclusive art
“We decided that our job was to form a barrier-free society for all, with a special focus on people with disabilities,” says Vladyslav Berkovskyi, “We want to create an environment where everyone, regardless of their status, has access to art.”
Vladyslav is the executive director of the Ukrainian Cultural Fund, which finances art projects in the country. The Fund supported the work of Iryna’s NGO among many other projects that focus on inclusion. The organisation’s funds have supported initiatives to make arts projects more accessible to everyone as well as activities run by people with disabilities.
Before the full-scale invasion, the fund supported more than 500 projects each year. Most applicants came from the performative sector–such as theatre where people with disabilities serve as actors.
“Throughout the years, we funded many projects focused on creating art spaces for people with disabilities, as well as projects which explained the barriers they have to face on a daily basis,” Vladyslav explains. “We also got many great initiatives on inclusive fashion and those that make art more accessible. For example, we supported the creation of an app thanks to which people with disabilities could experience operettas.”
The cultural heritage element is important–for example, adapting museums and many cultural artefacts so that people with disabilities can experience them. One of the projects funded digitised artworks and created virtual reality products to make art accessible to people with limited mobility.
“In 2023, we supported a project called Changemakers which sheds light on the history of disability rights movement in Ukraine,” Vladyslav adds, “It’s a book which includes essays from disability activists, and which showcases the achievements of these people and encourages further leadership in this sphere.”
War, access, and objectives
The full-scale war made things worse for inclusive art, notably because the Fund now has a much smaller budget to support diverse projects, and because many of the artists, cultural managers, and creators left the country, were killed, or wounded during the Russian invasion. Iryna was also affected–although one of her NGO’s inclusive art projects was selected by the Fund, there wasn’t enough money from the State to support it.
Prior to the full-scale war, the Fund’s annual budget was almost €20 million, but now it’s down to €3.5 million. This means less financial support for different projects. In addition, due to many relocations and security issues, the Fund is getting less applications with inclusive art projects.
Another change that the Fund has seen since the full-scale war is the emergence of new themes. Many applicants now want to run projects that combine accessibility with military issues, psychological resilience, and therapy.
“This makes sense because people are suffering from the Russian war,” Vladyslav explains, “We also pay more attention to veterans and other victims of the war, including people who got a disability because of the invasion.”
Regardless of the war, both the Fund and Let’s grow healthy keep the same objectives of creating a barrier free environment for all. “Culture cannot be only for a chosen group; it has to be inclusive and accessible to everyone regardless of who you are and where you are,” states Vladyslav.
Currently, Ukraine is working toward more inclusive and accessible projects that involve culture and other spheres, and that are aimed at making the country more disability-friendly. This, in many ways, is due to the large influx of veterans with disabilities–as well as a continuous engagement of human rights NGO and movements–as well as artists and activists like Iryna.
Other organisations working on inclusive art:
Theatre Movement Equal Opportunities;
Civil society organisation A Path Not Taken;
Inclusive theater at the Kherson public library;
Equal rights organisation Civic Alternative;
Arts workshop Dream Workshop.
This story was supported by the Empower Ukraine Project of the European Disability Forum.
Published on May 3rd, 2024
About the author
Anna Romandash is an award-winning journalist from Ukraine. She is an author of a book Women of Ukraine: Reportages from the War and Beyond.