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Disability leaders in Russia unite!

On August 21, 1991, the barricades on the road leading up to the Russian White House were taken down. Russian officials who had spent the better part of three days and nights barricaded in that building wearily went home to sleep. A resurgence of past tyranny and callousness for the Soviet people had been beaten back. The promise of a future shining in the light of personal freedom once again rose on the horizon. The next day, the future of Russian children with disabilities became a bit brighter as Boris Yeltsin authorized the establishment of a 12-member committee to develop a comprehensive, community-based, family-oriented program to serve children with disabilities. Each member of the committee represents a governmental agency that serves children and families.

This event has great historical significance. Until two years ago, people in Russia were not allowed to form organizations or develop support groups. The progress that some of the leaders there have made is heartening, but just like in America, there is a great deal to be done.

Last month when I arrived in Russia, I had the opportunity to meet with people in Moscow and St. Petersburg (formerly Leningrad). The people I met included parents of children with disabilities, people with disabilities and professionals. These folks are joining together in opening their society to meet the needs of people with disabilities and their families. Their task is monumental.

The governmental attitude in the past toward people with disabilities and their families has been a story of rejection, isolation, lack of treatment, deprivation and institutionalization. Family support as we know it was non-existent. Medical interventions were limited, with virtually no assistive devices to help people to access their communities. In many ways, their situation reminded me of the desperate conditions we faced in the United States in the 1950s and '60s.

Such a lack of service is, of course, disheartening. However, a governmental perspective that denies the existence of children with disabilities is horrific. This lack of recognition is especially perplexing because it contrasts the documentation and recognition of the World War 11 veterans, the many survivors of the siege of St. Petersburg who were and are disabled, and the "oppressed people" hose who survived the Gulags. These men and women have earned the respect and undying gratitude of the Russian people. Yet, children with disabilities cannot be served without entering an "out of sight, out of mind" institution. There are no other options for parents seeking services for their children.

On September 14, I attended Moscow's first All-disability Day. I met with leaders from all over Moscow and the groups that supported this effort. Trade unions, insurance companies, the Moscow Lions Club, politicians, TV personalities, filmmakers, and many others participated in this day of consciousness-raising. There, I got to know Ekatrina (Kate) Kim, the Executive Director of the "Contacts" Club, which is dedicated to putting people in contact with others. Hence, they are working hard at increasing the visibility of people with disabilities and are promoting the message of inclusion to the Russian people.

Two days later I made my presentation on "Family Support and Community Integration" at the seminar on disability at the Academy of Science in Moscow. Dr. Vera Morosava, the Chief Medical Officer for Families and Children, represented the above-mentioned committee appointed by President Yeltsin the day following the failed coup. Members of the Contact Club accompanied me to the Russian White House to review the new plan to serve all children and families in the community. Kate Kim, who speaks perfect English, was my translator. Our presence at that meeting produced what Kate felt were significant improvements in the proposed plan.

I later met with a group of parents at their home where I presented the idea of parent-to-parent support. They embraced the concept much as parents here did and still do. Since returning home, I have learned that the Contacts Club has identified 235 parents in Moscow who will form the first parent-to-parent outreach in Russia. Hence, a first step has been taken to provide support for families without involving institutionalization.

Later in the week I had the terrific opportunity of addressing the leaders of Moscow's Lions Club. I encouraged the Lions to continue their efforts in support of people with disabilities. At each one of these encounters, we shared food and drink and had many toasts ! The following week in St. Petersburg, I met the governmental leaders, parents, people with disabilities and service providers. The representative of the city stated, "We have not taken care of people with disabilities. We have ignored their needs. We have not welcomed them as a part of our community. We need to promote access, acceptance and services. No longer can we deny them the chance to work and live in the community."

It is clear that the concerns and heartaches, fights and negotiations, trials and tribulations that American parents face every day are not unique. Indeed, compared to our friends in Russia, we are in a somewhat enviable position. They are just starting the same long, arduous trip that we have been on for the last several decades. To offer them the benefit of our experience is an obligation we must be anxious to fulfill. To share in the joy of their triumphs, no matter how small, is a reward in which all of us in the parent movement share. I am honored that I was able to represent your hard work and compassion with our Russian partner parents.
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Title Annotation:Networking: Information from the National Parent Network on Disabilities
Author:Smith, Patricia McGill
Publication:The Exceptional Parent
Date:Nov 1, 1991
Previous Article:Extraordinary children, ordinary lives.
Next Article:The value of friendship.

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