Disabled Youth Advocacy Teams in Russia

By Marc Behrendt, World Institute on Disability

The All-Russian Society of Disabled People (ARSD) affiliates in Krasnodar, Perm and Novgorod regions and in the Republic of Komi have launched teams of disabled youth activists to promote inclusion for people with disabilities in their communities. With financial support from the US Agency for International Development and the British Know How Fund,
Moscow's Society of Disabled People "Perspektiva," the World Institute on Disability and Britain's Derbyshire Center for Integrated Living have collaborated on developing a replicable strategy for empowering youth with disabilities. This collaboration of Russian, British and US disability organizations has recruited and trained a cadre of 46 young disabled
activists in 7 cities. They are providing disability awareness training in Russian public schools, writing articles, soliciting local media coverage and conducting disability awareness workshops for local NGOs, businesses, and government officials. Additionally, the youth teams are outreaching to other youth with disabilities through peer support groups and self-advocacy training.

The All-Russian Society of the Disabled identified serving young people with disabilities as one of its priorities in Program of Action for 1997-2001.

New Leaders

Andrei Kopyltsov, one of the young activists in Perm describes leadership skills he has developed. "Thanks to my work in the project"I have developed my self confidence. I have become articulate and have the ability to appropriately approach any problem and solve it. I have developed a lot of experience working with people. I have learned to present myself in a way that people respect. They listen to my opinions and many share their personal problems with me, because they trust me."

The youth advocacy teams have proven to be fertile ground to develop new activists for the ARSD. In June, 20 of the project participants conducted self-advocacy workshops and introduced peer support to over 100 youth with
disabilities from across Russia at a week-long national Disabled Youth Conference held in Moscow. Additionally, in September, Elena Dunaeva, Konstantin Gonin and Tatiana Churbanova, three of the disabled youth participating in the advocacy teams traveled to Washington DC as a part of an exchange of Russian leaders hosted by the American Councils for International Education.

Svetlana Selezneva from Perm describes how advocacy starts on a very personal level. "If, in the past, when I was with non-disabled friends, I would never talk about disability questions, I am now always bringing these issues up with them. And what has surprised me most is that my friends don't only understand all these issues associated with people with
disabilities, but they are enthusiastic about them."

According to Yurii Tretiakov, one of the disabled youth activists working in Perm, the project has brought home the idea that disabled youth should be given more power in the ARSD, because "it is the All-Russian Society of the Disabled that can and must defend the interests of the disabled through adopting necessary laws at the regional, city and federal levels."

Starting with Children

The motivating force behind all of the youth advocacy teams' activities is to change public attitudes about disability and their first target was schoolchildren. Over the past year and a half, 56 Disabled Youth Activists and volunteers conducted disability awareness workshops to 10,451 Russian school children in 370 classrooms from 76 schools in Krasnodar, Krymsk, Perm, Nytva, Ukhta and Syktyvkar. Maria Stepanenko participates on the advocacy team in the city of Krymsk, in the Krasnodar region. She was immediately drawn to the project. After the very first classes at Krymsk schools, Maria saw the need to expand the project's activities. "It gave me great pleasure to see how the kids readily got involved in the work, how their hands drew schools of the future where both disabled and non-disabled kids studied together." The project also had a strong impact on Maria personally. "I feel useful to society - only a disabled person who has gone through the difficulties of mainstream school, who has been laughed at behind the back or teased about her or his manner of speaking or walking - can convey to young school children that disabled people are only human and just need a little more time to complete a task."

Yurii Tretiakov from Perm agrees. " I consider the title for our classes on awareness under the project - Lessons of Kindness - very suitable because it's kindness that will remain in the hearts of these children. In 10-15 years they will be in charge of making important decisions in the areas of state management, business."

The teams are also working to inform journalists, local politicians, planners and social service agencies about disability issues in their communities. A "Celebration for Accessibility" in Novgorod in 1998 inaugurated a ramp at Novgorod's Polyclinic No. 3. Approximately 150 people marched from the Central Square to the Polyclinic, including the disabled
youth activists from all four regions, the local ARSD affiliate, and children from two of the participating schools.

As a result of the project, over 70 print articles about the project were published, many of which were written by the youth participants themselves. The advocacy teams were covered in 5 television and 3 radio segments.

Personal Growth Through Activism

The project has had a profound effect on the disabled youth activists themselves. Elena Dunaeva, from the Komi Republic, says: "My entire life has been radically transformed and now has a purpose because of my involvement in the project. I have more self-confidence and am able to take failures easier. This is possible because I've grown capable of overcoming my own inner barriers." Another highpoint for her is that many new people with disabilities in her town have joined the group. She said, "The project brought fresh blood to our group that we needed badly."

Training Curricula

This was not achieved overnight. Over the past year and a half, Perspektiva, WID and DCIL provided extensive training and technical assistance to get the program going. Highlights include:
Training:
· 46 Disabled Youth Activists and Volunteers received 638 participant-days worth of training at 13 workshops conducted by Perspektiva, WID and DCIL trainers and an additional 3 workshops conducted by ARSD trainers in the regions;
· An additional 955 participant-days of outreach and training was provided to disabled youth in the community in peer support, disability awareness and self-advocacy;

An "Empowering Youth With Disabilities" training course has been developed, tested and refined, including the following curricula and materials:
· Disability Awareness Curriculum for school children ages 8-12,
· Curriculum on how to organize and implement peer support services for youth with disabilities (both one-on-one and group formats)
· Self Advocacy Curriculum
· Empowering Youth with Disabilities - A Training Manual
· 3 Informational Bulletins about the project were produced and disseminated to approximately 50 ARSD Regional Boards

Disability Advocacy in Russia

As the project evolved, the collaborators came to understand that one of the greatest benefits of the project is that we have created a replicable model for disability advocacy in Russia. One of the greatest challenges in conducting disability advocacy in Russia has been the assumption in the general community and among persons with disabilities in Russia is that the experts on disability are doctors. The idea that persons with disabilities are themselves the experts on their own lives is relatively new to Russia. Even among the disability community, many believe that expertise is gained only through formal education. This has kept youth with disabilities from participating actively in the disability movement in Russia. The "experts'" approach towards disability activism is much less effective on the local level, where the issues are much more deeply rooted in public attitudes and assumptions than in technical expertise. The project started out to determine whether empowering youth with disabilities and giving them a responsible role in their communities is an effective way to develop disabled activists. The experience of the disabled youth teams over the past year and a half demonstrates that the answer to this question is undeniably yes!

For additional information, please contact:

Denise Roza, Society of Disabled People "Perspektiva," Ulitsa Bakhrushina, dom 21/23 Stroenie 5, 11356 Moscow, Russia, Tel/Fax 095 951-97-68, Email: droza@glasnet.ru