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New Media Art and Disability Awareness in Russia

October 19th, 2013

One of my TV interviews at the opening of “Sustaining and Creating” at the State Russian Museum

Well, that’s it. Close the cover, button the clasp, and toss the book on the shelf. Thanks to an incredible amount of support, this week I accomplished just about everything I could possibly hope to in my career, and I am on cloud 9 x 999. (I edited that sentence several times… initially it said “art career,” but that wasn’t encompassing enough.)

This past Monday I set out on a Kennedy-Center-acquired grant to St. Petersburg, Russia. The Russians had allowed a show to take place in their State Russian Museum (the largest and finest collection of Russian art in the world) featuring only Americans. The show was organized by VSA and featured some absolutely fantastic art.

I have a great relationship with VSA and I was thrilled that they asked me to go as their sole representative to the opening: it was not only my opportunity to debut The Almagest Series at one of the more incredible museums in the world, but an opportunity to raise awareness for disabilities like Tourette’s Syndrome. I prepared extensively, but had no idea what to expect.


Four talks, a press conference, 5(+) television interviews, radio interviews, and hours upon hours of conversations later, I am done.


The madness started Tuesday. My first event was giving a Master Class at the Smolny University of the Russian Academy of Pedagogy with students who were learning to become art teachers. A tour of the University allowed me to glimpse what incredible drawers and painters they all were. I presented for about an hour and had such an enriching conversation with them… they were eager to learn more about coping with disabilities and we created audio/visual pieces together. My favorite part of the talk was showing them Videopong; they all created their own video pieces using the free resources that Videopong can provide. I am so excited that I was able to spread video art in this way, and that they will in turn be able to show their own students. They gave me a bell they had handpainted as a thank you… it’s beautiful!

Tuesday night (and again Thursday morning) I spoke to masters students at St. Petersburg State Bard-Smolny and St. Petersburg State University about approaches to new media art, both in studying it and installing it in galleries and museums. I’ve never seen audiences so interested in how to install a SONAR sensor! I felt like a toy soldier who’d just been reassigned to Candyland.

The exhibit sign outside of the State Russian Museum

Wednesday was going to be my easy day…I took a trip to the Hermitage and then went to the State Russian Museum for the press preview, and I did a couple different interviews before the show opened. The setup was elegant and beautiful. The Almagest Series was showing in two different rooms in the museum (a former palace), synced up… the sound creeped along the floor but also echoed on the 20+-foot-high ceilings. The effect was incredible… it truly helped the piece fulfill the meaning of “ambient” (I love Eno’s definition–the piece works equally well when paid close attention to, or when taken in passively).

Then I was taken to the large hall by the exhibit entrance. We opened the door to open the exhibit, and behind it there must’ve been 150 people for the opening conference… including 6-10 (I don’t even remember) television cameras, journalists, and radio people with microphones facing the front. And, of course, one microphone in the front facing all of them. Thankfully the exhibit curators spoke first, so I had time to prepare some quick remarks! This exhibit was a huge deal for three reasons:


  1. The art was incredible. Seriously, check out the work of Alice Chen (above). Look at the DETAIL in her work. The image just can’t capture how gorgeous it is.
  2. The artists’ stories were inspirational. I was so privileged to share the stories of these artists with the Russian people. Alice, above? She is legally blind. Instead of letting that keep her from drawing, she uses a magnifier to draw one small part at a time. This methodology CONTRIBUTES to her art… look at all the details that result from working so closely. Using disability as an aesthetic enhancement was a major theme in my talks. Read her story: 
  3. U.S./Russian relations. The Russian culture as a whole is further and further embracing disability. In the U.S., we are so privileged with what may seem like the most basic accommodations for the disabled (like wheelchair access) and cutting edge research… the Russian audiences were curious to learn more about these and adopt our lessons and experiences. But even beyond that, they wanted to learn about our music scene, our artists, our landscape. They wanted to know if I felt safe on the city streets, what I loved about St. Petersburg (the architecture… the people!), if I would do a piece inspired by my trip for them (ABSOLUTELY). Just outside the exhibit were two flags on the same stand: U.S. and Russia. I took several pictures standing in front of them. Despite all the gorgeous art in the exhibit, I think this may have been the most beautiful sight. Art speaks a universal language, and it was incredible to use it to bring our countries closer together.

On Thursday, several people told me they’d seen me on the news the night before. There was so much media coverage that Facebook even told me I needed to put my Russian name (my website won’t let me put in the Cyrillic characters) as my native name, because people were having trouble finding me. Crazy. I did another talk to curators and critics Thursday morning, and a couple of them came across town right after for my next talk, focused on disability awareness, experiences, and educational practices in America. I suppose the media coverage paid off… there were more than 60 people at that final talk: educators of the disabled and also some of their disabled students. What an incredibly rewarding conversation this was! We walked the gallery to discuss the art, talked about my experiences growing up with Tourette’s Syndrome, public vs. private education, and the benefits of new concepts in disability education (neurodiversity, neuroplasticity, differentiation… thanks Claire and Jayson for your incredible help! It really made a difference). Everyone there agreed that art was a great equalizer, putting disabled and non-disabled people in place to be taken at the same face value. I was able to share resources to help the disabled Russian artists find international exhibit opportunities. The theme of my talk: embrace what makes you unique.

Thursday night, I was so utterly exhausted that I was only able to muster up enough energy to go to the Russiain McDonalds and order a Bolshoi Mak. Friday, I came home. I am spent, but having the opportunity to raise disability and Tourette’s awareness, exhibit in one of the most gorgeous spaces I’ve ever seen, and help improve U.S./Russia relations? It shows you the power of art.

There are dozens of people I need to thank… from the curators, to the drivers, to my wonderful translator… but I want to especially thank Sonja and Tatyana for making it happen! And of course I would be remiss without thanking Volkswagen, which has been an incredible sponsor to the VSA programs.

I may not be ready to close the book on my career QUITE yet… a Polish group came to my Thursday talk and they want me to come talk about new media art and disabilities in Poland. Time to start brushing up on my Polish!

The Church of Spilled Blood, right next to the State Russian Museum

This is a staircase in the Hermitage. The whole museum is this gorgeous, but, you know, also has art. The collection of Impressionists was great!

When in Rome… yes, I drank compote. Yes, it was good. The fruit gives it a delicious flavor, even though it looks a bit… unappetizing

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