Changing attitudes to change lives

Denise (the 3rd left, background) with her workmates. Source: Elena Bobrova

Denise (the 3rd left, background) with her workmates. Source: Elena Bobrova

Denise Roza has spent the past 20 years working to improve the lives of Russians with disabilities. She spoke with RBTH U.S. editor Elena Bobrova about her background, the changes she has seen and the challenges still ahead.

RBTH: Where are you from and where did you go to school?

Denise Roza: I grew up in Chicago and I went to a small liberal arts school called Knox College in Galesburg, IL. I studied foreign languages, French and Russian.

RBTH: When did you first visit Russia?

D.R.: I came here in 1984 to study Russian. But then I didn’t stay. I did a semester abroad for four months in the Pushkin Institute of Foreign Languages. It was a very exciting time and I loved being here. I didn’t spend much time in the dorm and was always out meeting with my new friends. As soon as left I set a goalto come back. I returned in 1986-1987 when I came to study as a graduate student, writing my thesis on social linguistics.

RBTH: How did you establish Perspektiva?

D.R.: I later came back to the U.S., continued my studies in Texas, and in May 1989 I got a call from the same program I studied through [American Councils of Teachers of Russian] and they asked me if I would like to become a resident director for students coming to Russia. At that time, it was very popular to study in Russia and about 250 students were coming for a six-week summer program. I stayed for that summer and ended up doing it more than three years.

In 1994, after working some time in business, I realized that I wanted to do something in the non-profit sector, which was just beginning to develop here. The World Institute on Disability (WID) was looking for someone to  set up and be in charge of their office in Moscow and, I suppose it was destined to be. Two days after contacting them, I had an interview and they hired me.

At that time I didn’t have much experience working with people with disabilities. My disabled colleagues from WID often traveled to Russia to share their experiences with Russians with disabilities, and I learned a lot from them.

In 1997, the funding for our programs [for the WID office] was ending. We knew about it in advance, and together with my Russian colleagues, I decided to set up a non-profit organization called Perspektiva. It was February 1997.

RBTH: Has the attitude toward people with disabilities changed dramatically during the past 17 years?

D.R.: Yes, of course attitudes have changed. When we started, our goals included getting youth involved, helping them get a quality and inclusive education and good jobs.

Attitudes won’t change until people are part of the community, until a non-disabled person works beside his/her disabled colleague, or goes to school with his/her disabled peer. That’s why we always talk about inclusion and equal rights and access in all areas of life. We always try to emphasize this message— people with disabilities have enormous potential and can live full and interesting lives once they have opportunities and a barrier free community.

RBTH: Can you say that your proposals are met now with more understanding from the government, society, business?

D.R.: I definitely can say that attitudes have changed, and there are many new government programs to improve the lives of persons with disabilities. I see an openness and curiosity that didn’t exist five or six years ago. More employers contact us to hire disabled people; more volunteers would like to take part in our activities. We provided recommendations for the  legislation on inclusive education, which went into force in September, 2013.  

Even media coverage of disabilities issues and terminology has changed over 15 past years from negative to correct. On our website we have correct disability terminology for journalists, and we’ve also held workshops for mass media.

RBTH: Do you think that the Paralympics in Sochi helped?

D.R.: I’m glad that media coverage for the Paralympics was good, but I was frustrated at some points. I heard a comment from one man, who, after  watching a sledge hockey game, said sadly: “It must have been so hard for them to do this.”

My neighbor was a little more optimistic commenting on a sledge hockey game, “It was hard for me to watch it at first, but then I began to enjoy it and cheer for our team I was lucky to be in Sochi with my team the first few days of the Games.

The spectators were so supportive of all of the athletes. It was a great feeling to see so many excited and supportive people. I kept thinking ‘this is what we have been trying to achieve for so many years.’

RBTH: How do you manage to run both Perspektiva and Best Buddies Russia, which you brought to Russia in 2009? [ed. Best Buddies International is a global organization that creates one-to-one friendships between volunteers and people with disabilities.]

D.R.: We work very closely together. Perspektiva didn’t have any programs for people with intellectual disabilities and creating one was my dream for a long time, especially a program that was about inclusion.

In our Best Buddies’ programs we help people with intellectual and developmental disabilities and without form one-to-one friendships, and this leads to so many new opportunities for both of our buddies, but especially for our buddies with disabilities.

Today in Russia most people with intellectual disabilities have few or no opportunities to meet with their non-disabled peers. So our program helps people with disabilities to do that and to become more independent and self -assured.  

RBTH: How big is your team in Moscow?

D.R.: I have 55 people on staff now, Perspektiva is expanding its programs to new regions so we are hiring staff outside Moscow. There is a demand for creating an employment program in the regions.

We have support from the Ministry of Economic Development and the Ministry of Social Affairs and Labor, and a lot of businesses who want to hire people with disabilities in their cities. For example in the small city of Ryazan, with support from Citi Russia we launched an employment program. In Nizhny Novgorod our partner KPMG has hired a wheelchair user to work in their IT department.  

RBTH: What are your organization’s main sources of funding?

D.R.: They are different: private donors, businesses – Ernst & Young, Kaspersky Labs, MTS, Citi Russia, Johnson & Johnson, Exxon Mobile, DPD, Nike – all these companies donate money and also participate in our Business Advisory Board on Disability that aims to promote employment for people with disabilities; We are supported by MATRA (the AID program of the Netherlands), the European Union, two Moscow city government government agencies, the Ministry of Labor and Social Affairs, Open Society Foundations, Charities Aid Foundation Russia, Transaero, and more. We also get thousands of dollars worth of in kind from theaters, local businesses, local media holdings, etc.

RBTH: Were you affected by the NGO law? [ed. Russian law requires any NGO that receives funding from foreign sources to register as a foreign agent]

D.R.: We had an inspection last April, like many other organizations, and had to provide thousands of documents to the local prosecutor’s office. We are not political, our goal is to improve the quality of life of people with disabilities. So far we haven’t been affected and I’m knocking on wood that we won’t.

RBTH: What events do you have planned for the rest of the year?

We are holding our  7th annual disability film festival in November, which we hold every two years; we usually show 80 films from 25 countries We are still accepting films for the festival. On June 1st we will mark “Children’s Dights Day” with a series of events at Gorky Park.

In the summer, we’ll have summer camps for our teenage leaders and our Best Buddies participants, and in the fall we will hold a competition for the best inclusive school in Russia. This is just a few of our activities. We are ambitious, committed to change and work hard to achieve it.

Read more: Life for people with disabilities in Russia is getting better>>>

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