As the world adapts to life without in-person gatherings, many artists, multimedia practitioners, and educators are left wondering how to reach people through the digital world. For Cyril Tsiboulski and Veronika Grigoryeva, the U.S. and Russian directors of the Partnership Project “This Is Me. I Am Unique,” the challenge posed by COVID-19 turned into an opportunity to reach more people with their project.
“This Is Me. I Am Unique” is a multimedia exhibit of short films and photos featuring the lives and stories of 10 children and adolescents with Williams Syndrome in the U.S. and Russia.
Cyril Tsiboulski, U.S. project director, is based in New York City, but originally from Moscow. “I love telling stories,” Cyril stated. “My mission is to push the limits of new immersive technologies, data visualization, storytelling, and interactive experiences as well as helping forward-thinking organizations achieve their missions.”
filming Misha, who is featured in
one of the films for the exhibit, near
Moscow.
Veronika Grigoryeva, Russian project director, was born and raised in Moscow. At the age of 25, she started volunteering at the charitable foundation “Volunteers to Help Orphans” and later joined the organization as a coordinator of the volunteering center.
Veronika’s experience working at the foundation would later help her form her own organization.
“In 2008, my daughter was born,” Veronika shared. “As soon as she was diagnosed with a rare disease, the Williams syndrome, I started gathering and processing information. Back then, there was little information about this disease in Russian, and my prior experience of working at a charitable foundation came in handy, and I decided to create my own foundation – the Williams Syndrome Charitable Fund.”
The Williams Syndrome Charitable Fund (WSCF) advocates for the adoption of proven protocols of care for patients with Williams syndrome and other disabilities in Russia and connects thousands of families and medical professionals with needed resources and each other.
For Veronika, the idea of a multimedia exhibit came about after she reflected on what brought U.S. and Russian audiences together.
“After reading about the competition, I realized that what we had in common was acceptance. What is important is how people perceive each other and which emotions they feel inside. I wanted to show that inside we are quite similar, we all experience the feelings of sympathy, loneliness, curiosity, and a multitude of other emotions, which we feel regardless of our diagnosis or place of residence.”
For Cyril, the importance of the exhibit stems from the prejudice and discriminatory practices in housing, employment, and social interactions that persons with disabilities face, who are often labeled as “other.”
“What makes each of us special and unique are the things that are common to all of us—our likes, dislikes, our hopes and fears, all the interests and pursuits that make up our daily lives. I believe that prejudice is not fixed. Studies show that people can be guided to change their mindsets. By building bridges, not walls we, as a society, can change.”
Originally slated for in-person exhibits in New York City and Moscow, Cyril and Veronika had to work to ensure that their project could move forward after COVID-19 shut down public spaces in both countries.
of the featured children in the exhibit, in a barbershop
near Brooklyn.
“We had to think long and hard about how to change and evolve the project to adapt to our new shared reality,” Cyril reflected. “The key in this evolution was always keeping our original goals in our sights. Change is possible and I believe we have successfully transitioned our project to the new format without compromising its goals and impact.”
The team worked hard to adapt the installation to a multimedia format and launched the project on May 4. Originally focused on reaching 250 people in each country, the scale of the community response surprised the team.
“Honestly, we haven’t expected such an outpouring of support and all-around positive feedback as we have seen since the online exhibition launched in early May,” Cyril said. “We are thrilled it’s connecting with people, not just in the disabilities communities but with much wider audiences as well. We have seen thousands of people engage with stories online from all over the world and many went beyond just watching the stories featured in the online exhibition, and have actually contributed their own thoughts on what they believed made them special and unique.”
photo series for the exhibit, taken by
Danil Golovkin.
Over 3,000 people have visited the site since the launch, with over 2,000 visitors from Russia. The project has also gone global, seeing visitors from Ukraine, Belarus, Kazakhstan, and Germany, among others. There are over 22,000 likes and hundreds of comments on posts across the Instagram and Facebook channels for both organizations.
It isn’t just online visitors that are impacted by the project. The children that participated in the films and photos also changed as a result of the project.
“We noticed that children developed confidence,” Veronika shared. “Adolescents shared the pictures and videos on their social media accounts. Those who are younger are curious to know what people say and write about them when they see their photos.”
For Cyril, some of the most rewarding feedback is from the parents of the children featured in the exhibit.
“Josie’s mom wrote a quick note just after the exhibition went live: ‘Amazing! Thank you! The project is so beautiful I can hardly believe it! Thanks for including us! What a cherished memory.’ It really means so much to everyone to know that we created something that not only successfully communicates the goals of the project but was also a rewarding experience for all the participants.”
Reflecting on the success of the project, Cyril shared how the coronavirus outbreak has highlighted the deep need for human connection and understanding, no matter where a person is located.
“I think the COVID-19 pandemic exposed a truth that while everyone’s story is unique our desire to connect with others is universal and that is what this project does really well,” Cyril shared. “That is partly why we have seen such wonderful response.”
Cyril also emphasized that the exhibit wouldn’t have been possible without an artistic team dedicated to the project.
“A lot of very talented creators came together to tell stories that truly reveal our shared humanity. Our director Natalia Bazina, director of photography Kirill Groshev, producer Natalia Sklyarova, and photographers Danil Golovkin and Monika Dubinkaite. We are so grateful for their hard work and dedication to this project, they made it what it is.”
Are you ready to listen to these stories? Check out the exhibit by clicking on the image below, and hear directly from participants their hopes and dreams, and what makes them special.
