Arts & Culture / Mosaic / February 19, 2020

Alumna in Russia makes strides for disabled

Denise Roza ‘83, talks at the 2020 Alumni Achievement Awards Ceremony on Friday, Feb. 14 about her experience watching the Soviet Union collapse as well as her work on creating NGOs in Russia that promote disability services. (Rob Nguyen/TKS)

Knox alumna, Denise Roza ‘83, has watched the fall of the Soviet Union and the rise of a Russian nation trying to catch up to Western standards — specifically in disability services — right before her very eyes.

Roza was one of the three alumni presented with the 2020 Alumni Achievement Award Winner on Friday, Feb. 14. She also gave a talk called “Breaking Down Barriers: Tackling Disabilities in Russia” that same day, focusing on the fall of the Soviet Union and Non-Governmental Organizations (NGOs) in a post-Soviet Russia, specifically trying to advance disability services in the country.


Fall of the USSR

Roza started studying Russian at Knox before the program ended, and continued her language studies at a summer program at the University of Indiana where she heard about a study abroad opportunity in Moscow. Before going, she volunteered at a Jewish Center in northern Chicago that had many Russian speakers, where she practiced her Russian and made many connections to people she later met in Russia.

Soviet citizens were discouraged to talk to foreigners, so what students like Roza did in order to interview natives was bring lots of gifts. This is where Roza noticed the first big culture shock of being in a socialist country in 1984.

“In the Soviet Union, our bags were checked thoroughly. Everything was checked, everything was pulled out of the bag. They were looking for information that was not allowed into the country. It seemed like it was a different world because it was a different world,” Roza said.

Once inside the country — and for the entirety of her stay — she and the other foreign students in her program were convinced that they were being spied on and that their rooms were bugged.

“We never mentioned people’s names when we’re talking to people. You’d have to call people to arrange to meet them somewhere and usually you met them not at their apartment, but somewhere in the city and then quietly went to their apartment. They were telling you, ‘Just don’t speak at all until you get to the apartment.’ People were still very fearful of having any kind of dealings with foreigners. You weren’t really supposed to deal with foreigners,” Roza said.

In 1987, just a few years after Roza finished studying abroad, she returned as a resident director for American students studying in Russia, four years before the collapse of the Soviet Union. She had already noticed changes in the USSR, like people being less fearful and more open when talking to foreigners as well as some cities that were closed to non-Russians becoming open to foreigners for the first time in decades. She also noticed the downfall of citizen’s support for a communist regime with the films people would watch.

“There were lines of hundreds and hundreds of people waiting to see this film because the film was called Repentance. It was all about repenting and saying, ‘Okay, that was the past and we have to move forward, we need a new future.’ All this talk about democracy,” Roza said.

The crumbling of the Soviet Union intensified when parts of the country started to become independent from the USSR, such as Ukraine and the Baltic countries. This led to extreme food and goods shortages as the Soviet system relied on all members of the USSR providing for each other. These shortages affected not only Russian citizens, but also Roza and her students.

“There was no food in the stores, there were no goods, there was nothing. Here, I have this group of 25 American students, they were always hungry. We had these coupons, but there were always these horrible lines so we would designate two students who would go and stand in line for five hours to buy food for the rest of the group,” Roza said.

Roza also noted how, looking back, it was amazing how so many people survived such a severe change in systems.

“All of a sudden it was collapsing. I think back to that time, I think it’s pretty amazing that so many people survived. It was a very quick change they had to deal with,” Roza said.

A new capitalist society was such a drastic change for Russians, which many found difficult to adjust to in a whole new system. Roza recalls how early on the Russian economic system just did not work because people were still in a socialist mindset and did not understand capitalist business. For example, people used vouchers for things like shares in companies the same way they used money.

“If you worked in a company, you weren’t getting paid a salary because there was no money. Instead you would get this voucher. People would take these vouchers and they would go buy things with them (…) It didn’t work,” Roza said.


Mindset Towards Disabilities

What was also not present in the Soviet mindset and what Roza has been working on since 1994 are NGOs; specifically, NGOs that worked for increasing disability services in Russia.

The Soviet Union, and now Russia, has always been behind many other countries in terms of these types of services because in their socialist system, people with disabilities were seen as hurtful to the system.

“People with disabilities, they had no rights, they were totally invisible (…) I had never seen somebody with disabilities in Russia,” Roza said. “People in wheelchairs were stuck in their homes because they couldn’t even get around. Wheelchairs were called home wheelchairs because the expectation is that you only use them in your home because you would never leave your home.”

For example, because the Soviet mindset believed that people with disabilities could not contribute to the state, as soon as someone with Down’s Syndrome was born doctors advised their parents to put them in institutions. People with physical disabilities would never be able to leave their homes because nobody thought of accessibility and thus they would get a poor education and not be able to find work.

“(Doctors) advised you to put your child in an institution and they would say things like, ‘Oh you can have another baby’ or, ‘Your child would have no future,’ (…) We are always trying to break that image,” Roza said.


Breaking Negative Images

Roza has started two different NGOs in Russia that support people with disabilities: Perpektiva and Best Buddies Russia. Since their creation, Russian buildings and transportation as well as Russian’s mindsets towards people with disabilities has changed dramatically.

Russia ratified the UN created Convention on the Rights of Persons with Disabilities Act in 2013, something the United States has not made into law yet. But the biggest boost to equality was from The Russian Paralympic Team that propelled much of this forward as Russia’s disabled athletes were extremely successful in the 2010 Paralympic Games in Vancouver, Canada. The excitement around their success catapulted the 2014 Paralympic Games held in Sochi, Russia which became very successful in terms of accessibility, transportation and support.

“The athletes were very well received and the city was more accessible than any other I’d ever been in Russia. The busses were accessible. Transportation is a big issue because people just think, ‘Oh the building just has to be accessible,’ but you have to get to the building first,” Roza said. “People who were out there and performing, not only were they winning medals, but it was nice that it showed the fact that they had families, they had friends. They weren’t just super athletes, but they were regular people,” Roza said.

Ever since the 2014 Paralympics in Sochi, Roza has noticed a huge change in how Russians treat people with disabilities. People are more interested and open to talking about them, as well as wanting to use appropriate language around the topic something Roza has worked on a lot around the Paralympics.

“I had neighbors (…) all of a sudden asking me about disabilities. They weren’t afraid to talk about it as I think they were kind of nervous (before the games). ‘Can we talk about disability, I was afraid of offending someone or afraid of how I talk about disability.’ So I think the games were a very important turning point,” Roza said.

Roza has also worked on an employment program for people with disabilities, an education program, a physical education program and a program to train architects about universal/inclusive design.

“When we started doing our work, nobody (in Russia) had heard about this concept. Nobody thought about the fact that people with disabilities have the same rights, not even people with disabilities. We met so many people who needed to have their mindset changed,” Roza said. “You’ve got to change the community, not the person (…) To be honest with you, we still have a lot to do, although we’ve seen huge changes.


Dmitri Chambers, Co-Mosaic Editor
Co-Mosaic Editor

Tags:  alumni Alumni Achievement Awards disability disability services ngos Russia Soviet Union ussr

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