HELPING BLIND IN RUSSIA
Russian American Medical Association
National Conference, Boston, October 4, 2008
Good morning! My name is Svetlana Sussman. I am delighted to be here with you.
I am not a medical doctor, or a dentist, or a nurse. I earned a degree in chemistry but in the 90s you could make a better living teaching English than doing research in chemistry. I learned English at school, and it enabled me to meet many interesting people, among them my present husband Harris Sussman. When we first met, I thought he was a typical American; I can assure you he is not.
I was born in the Soviet Union and lived all my life (before meeting Harris) in St. Petersburg, arguably the most beautiful city on Earth. I was the only child of very loving parents.
My father Moisey Naumovich Adamov was born in 1920 in the midst of the Civil War and famine to a Jewish couple. His father was a violinist at the Mariinsky Theater. His mother was taking care of him. At the age of two as a result of complications from measles my father lost his sight. He never regained it. He went on to live his life in the Soviet Union going through the historic nightmares of Soviet history and was able to reach the top of academic and scholarly excellence.
Little Mosya attended the first four grades of the special institute for the blind established in the early days after the Russian revolution of 1917 and set up as a boarding school for blind kids, where he learned to read and write Braille and got some primary education. His parents did not want Mosya to be raised away from home so he transferred to a public school within walking distance of his home. He finished school at the top of his class supported by his classmates, parents and teachers. He continued to study at the physics department of the Leningrad State University (two years during World War II), started as a mathematics instructor at another university. After a post-graduate program equivalent to a modern PhD program he defended his candidate of science thesis, worked as a mathematics professor for many years until he defended his doctoral thesis and fully focused on theoretical research in quantum mechanics. He lectured special courses in quantum chemistry and continued theoretical research until he passed away in 2005. He published alone and with co-authors over 100 scientific papers in major refereed journals in Russia and abroad.
He loved reading and learned foreign languages and read fluently in English and German. He used to receive boxes with volumes from the US Library of Congress, the Royal Library in the UK, from Leipzig. He loved traveling. He never missed a conference in quantum chemistry held in the USSR. Very often we traveled together as a family - we went to Kaliningrad, Kishinev, Tbilisi, Estonia and Latvia, Samarkand.
My father loved swimming and an anecdote tells of him floating in the open sea while swimming off Odessa beach. With his graduate students he climbed the steep slopes of the Northern Caucusus Mountains in Pyatigorsk and Kislovodsk.
He was the bread winner in our family; he was my friend and confidant. He was truly interested in music, poetry, philosophy, and politics (listening to the BBC and Voice of America and radio station Liberty through the buzz of radio waves jamming).
I never thought of my father as an "invalid," the official designation for people with any physical handicap in Russia. He was able and performing at the highest level of human achievement.
When he died nearing his 85th birthday, I started to realize what a vast void I have to fill not having him in my life. To honor his life, my husband and I decided to start a project to support talented blind people in Russia.
It started with my writing his brief biography aboard the plane on the way back from the funeral. When my plane landed, I had a plan in hand. We decided to tap into numerous connections my father had with people at the helm of the blind community, his old-time colleagues and friends. Very quickly this circle expanded and began to include talented teachers who dedicated their life educating blind children from kindergarten through university. I have become friends and stayed in touch over the Internet or phone visiting every time I have gone back to Russia.
When in the winter of 2005, I brought up my idea to start the MN Adamov Memorial Fund to honor my father's memory and support people I met through him with the resources we had used to support my father, Harris enthusiastically agreed.
I start conversations by asking about people's dreams. And then we see if in any way we can bring this dream closer. We learn of courage, perseverance and tremendous drive in people who are considered by official Russian pedagogy "defective." Most blind students get their education at the Boarding School for the Blind. I have not met anyone who was able to attend a public school.
We receive as much as we give at every turn with every effort, with every step. I live inspired by the people we're trying to help. This is a tremendous opportunity of making a difference and living an inspired life.
I have a full time job at MIT, so for Harris this project has become a learning experience about philanthropy in the US, Russian-American relations, politics and attitudes, and also meeting many blind. For Harris working on the project has been an important activity. It could not work without him.
Good day. I don't have any slides: I'm used to talking to blind people. I am American but I know more blind people in St. Petersburg than doctors in America...
Three and a half years ago we started by asking what is life like for a blind person in Russia?--not good. The state of social services, educational services, medical services and economic support--in some respects it was worse than it was for my father-in-law.
So this was the problem--how could a blind person in Russia today have the same chance to succeed and have a superior quality of life that Moisey Naumovich had 80 years ago or 40 years ago or when I met him 15 years ago? Because as you know the situation had gotten worse in terms of social infrastructure, the legal system, economics, government policy, medical care and public awareness.
And then we had to ask, what is the best way for someone in America to help some blind people in Russia? Given the political situation in both countries, the cultural differences, the logistics challenge of the distance, at least 8 time zones away, (and the problem that I don't speak Russian)--and the absence of a culture of philanthropy in Russia, the official attitude of Russia against international assistance, the falling value of the dollar, the difficulty in finding allies and supporters and couriers and people to talk to about this....
Now we are at a critical point--we have been able to help a few people a lot and a few hundred people a little and maybe that is enough. You know there are different ways to improve someone's condition. You know that small simple things can really make a difference-things like trust and caring.
We have helped some people use their capabilities and advance in their lives-to study, to play music, to use a computer, to dance, to teach...
I was writing to one blind man in Russia about sending white canes and he said: No, they are not canes! They are magic wands! I said: I hope so--I have told people that they will help people to walk. He said: They change life style dramatically! Not just walk but increase self-confidence and self-respect!
So I had a fantasy of 11,000 visually impaired people moving down Nevsky Prospekt with their white canes so nobody in St. Petersburg could say they never saw a blind person.
Our wish is to have people living a fulfilling productive creative life...and by the way they are blind.
We are the only group in America dedicated to helping talented blind people in the former Soviet Union. This is a strange place to be in, in both countries. We are guided by the example of Svetlana's father and by our concern for the people we know and care about now.
We have no bureaucracy, no staff, no paperwork, no third-party payments. Our administrative overhead is our kitchen table. We are reliable-when we say we will do something we do it, after many international institutions and organizations made promises they didn't keep; no wonder blind people were skeptical of us. Many of them still wonder why we do it when they don't know anyone in Russia who will help them.
We ask ourselves how we can help people who are being ignored, neglected, treated badly, punished because they have a difficult physical condition. Who would understand what we are dealing with? That's why this is our first public appearance--we think you understand that we are walking a fine line. We know there is more we could do if we had some help.