Interview with the Director General of the organization that helps to organize life of people with mental disabilities “We are still here”
Eighteen years ago, uncustomary workshops were opened in the Verkh-Neyvinsky settlement. There people who were usually denied jobs in other places could actually get one. By virtue of them, people with autism, Down’s syndrome, cerebral palsy and other mental “individualities” have the opportunity not only to get paid, but also to develop creativity and learn how to live outside the walls of psychoneurological institutions.
The organization is “coming of age”, and on this occasion Ekaterina Yurkova, our journalist, interviewed Vera Igorevna Simakova, one of the founders and the General Director of the “Blagoye Delo”. She’s been heading the organization for almost two decades. We have discussed the long path from a student of the physicotechnological department to a social pedagogue and a woman who traveled half of Europe in order to open an important social organization to help people with disabilities organize their life in a small Ural village.
— Vera Igorevna, now you are the head of one of the largest organizations in the region established to help people with disabilities. It’s not as simple as that: communicating with different people, explaining to them the importance of social projects like the “Blagoye Delo”. Have you dreamed of such a job when you were young?
In fact, I did not know until adulthood that there are people with disabilities, I did not encounter them in everyday life. Therefore, I did not know they needed help. But I have always wanted to understand why a person lives and how he is connected with the world.
As a child, I was surrounded by music, fine arts, art history, and science, I saw in others the desire to understand each other, to explore other cultures. It seemed to me that all people are equally healthy, strong, and everyone has the opportunity to progress the way he or she wants. My family taught me there was something superior that guides a person. Therefore, first of all, it is worthwhile to engage in science as an accurate and true knowledge that allows you to build certain perception of the world. Not forgetting about art, because it brings harmony and beauty, as well as the nature, and a culture created and manifested by man. That is why, when we meet real, true art, we feel it with all our senses.
Now it seems to me that one of the a reason of being on earth is the creation of a second nature: morality, culture, art, and creativity. Maybe that’s why we suffer and struggle because we feel this inner call, which is very difficult to perceive.
— It seems that you grew up in a good family. Who were your parents?
My mom is a doctor, and dad is a physicist. But they’ve come from very different families. My mother’s grandmother could neither read nor write: the family had many horses and cattle to take care of. Instead she knew many fairy tales, stories, and fables, she knew all herbs, and was able to heal. One could call her a witch. Back in the 1930th, the grandmother’s family was dispossessed, they had to go into the woods on one cow. Grandpa Ivan built the house again. Although they lived poorly, it was important for grandma that her children were educated, so she sold one chicken and bought my mother a train ticket to Sverdlovsk so that she could enter any university. Well, mom got on the train, and someone asked her where she was going. She replied that she wanted to enroll to the university, and she was advised to go to medical one, because white color of the doctor’s robe would suit her brown eyes. That’s how mom chose medicine.
Dad’s family is completely the opposite — well-educated people. Daddy’s dad together with Nikolai Vavilov (famous botanist and geneticist — Ed.) bred new varieties of grain that could survive in Western Siberia. And Dad’s uncle was the co-founder of the chemical department in Irkutsk’s university. Dad also enrolled in physicotechnological department, because he wanted to be an electric engineering since childhood. During the Second World War, all the men of his village were taken to the army, back then my Dad was eleven, and he alone ran electricity to all the houses.
My parents met as students. They lived together for 65 years, although their love story is anything but simple. Dad got assignment to the Novouralsky Electrochemical Plant, where he later brought my mother. My brother and sister were born in Novouralsk — I am the third child. By my birth, everything was already arranged in my family and in Novouralsk. I thought it was the same all over the world: music schools, hospitals, goods in stores. This is probably a feature of restricted-access cities: I had a busy and peaceful childhood. We could think not about having to eat somewhere and earn something, but about philosophical things. Thanks to my dad, I graduated from music and English schools — everyone in our family spoke a second language and played musical instruments. I was sure it was the same for everyone.
— Did you go to study physics because you wanted to follow in your father’s footsteps?
Physics seemed to me the only objective science. I thought it would help me understand the meanings and nature of the world, because this science is very specific, it has research methods. And mathematics is quite enchanting, it describes our universe with objective laws.
But the more I studied physics and mathematics, the more I realized that it did not bring me closer to human knowledge. By the third year, I realized that based on physics alone, I would not be able to understand the world and people. The fact that we are all made of the smallest particles does not explain the personality, and the development of art history helps in no way. My favorite courses were philosophy and art history, we had excellent teachers, so I could delve into those issues . I already had a bad habit to go till the end on the path that was once settled, and I graduated from physicotechnological department, but I already wanted to move towards a different area.
— And you’ve got bachelor degree in pedagogics?
Everything was more complicated and simpler at the same time. I was actually lucky, because all the factories were closed in perestroika times (Laughs. — Ed.), and we became the first group that got no assignment after studies. I had a specialty in “Non-destructive methods and quality control devices”, we learned the structure of different materials and how to study their internal structure. We had to work, for example, at aircraft factories in order to control quality. We graduated in 1991 in Yekaterinburg, there was no job, but my husband worked at the Institute of Thermophysics. And it was a good opportunity to stay at home with my daughter, who was born at that time.
It was then that I became interested in how children grow up, whether they copy their parents or maybe, become a part of them. This is how my interest in pedagogics and the creation of conditions for the development of a person, the formation of his values, was discovered. The most important thing for a person is to remain true to oneself, and so I wanted to understand the path of each person, to see how both good and evil come into his life, and how he chooses the side. That took me to pedagogics.
Back then a huge amount of previously inaccessible philosophical literature flooded the country. For two or three years, I randomly delved into everything: Buddhism, Christianity, esotericism, psychology. Then I learned about Waldorf pedagogy (An alternative pedagogical system based on anthroposophy. — Ed.) and got to an international educational seminar in Moscow, where Hans Rohrwacher taught. He is physicist, and also a flutist and orchestra leader.
The moment I met him, the world seemed to become whole for me. Usually we study physics and art history separately, without putting them together, and, as a result, there is no complete perception. And thanks to these courses, I saw all the connections, for example, how music is related to mathematics and human development. Then, I went to work at the Humanitarian and environmental school as an tutor and continued to study.
— When did you first meet people with disabilities and realize that not everyone has equal opportunities in the world?
When the school where I worked, was shut down and the institute, where my husband worked, burned down. We had nowhere to go. Then my husband got a job at the Novouralsky plant. Here I, Yulia Malkova, Natalia Mashanova, who later worked with me in the “Blagoye delo”, opened a school of supplementary education at the local library. First of all, I did this for my daughter, because I wanted the working methods and disciplines of the Waldorf school were part of her upbringing. Those disciplines include painting, music, foreign language, experiencing the seasons, and they shape a person in a natural way.
We’ve got a group of eight children, and there was a four-year-old boy, who moved a little differently and hardly spoke. Nevertheless, we had no problems communicating with him — he fit in. Then they brought another boy… I understand now that he had severe autism, but then I only saw that he did not speak, ate everything, did not obey at all, so we did not take him anywhere — he could not study in the group, he destroyed it. Lessons with a group of children did not suit him. And the question arose, what to do, how to get on the right side of him. In other words, meeting these boys played a huge role in my life, and thanks to them, the “Blagoye delo” was born later.
People with disabilities have always been hidden in psychoneurological institutions, so when I first saw such children, I was shocked. But I realized that other tools were needed to work with children, who were then called “uneducable”.
— Where did you eventually find those “tools”? As far as I understand, back in the 90s in Russia little was known about the methods of working with children with disabilities.
My colleagues and I began to search for information and found a Rudolf Steiner seminar on Curative Pedagogics in St. Petersburg. They talked about communication with the healthy part of the personality of a mentally disabled person, how to help him develop and live through the stages of growing up. And in 1999, we went to Irkutsk for a conference of specialists. That’s how I found out that there is a World Union of Curative Education Teachers and Social Therapists in Switzerland, I wrote a letter saying that I wanted to come, and I was invited to the conference.
The trip was a lot of fun: the cheapest ticket was to Geneva, and after that it was necessary to take four cross-country trains through the French part, where nobody speaks English. It was such an adventure (Laughs. — Editor’s note): I was approaching the train, instead of the handle I saw a flashing button and did not understand at all that it needed to be pressed in order for the door to open.
The conference was attended by about 700 specialists from all over the world. I wanted to find partners who could tell teachers working in the Urals about therapeutic, pedagogical and social methods of working with people with disabilities. There I met Johannes Marcey (Sweden), Brigitte Dack (Sweden) and Hank Poppenk (Netherlands), they both agreed to come and help us organize a three-year educational seminar.
In order for the seminar to take place, I had to go to Sweden, but in Yekaterinburg at the train station my bag with all my things was stolen, only my breast bag with my passport remained. I didn’t panic and continued on my way. Interestingly, sometimes there are moments in life as if someone tests you whether you will go further or not, whether you decide on what you have in mind or stop. As a result, I got to Sweden without anything, but they dressed me there, and I returned a completely different person: I was wearing not skirts and blouses with ruffles — these were the clothes I had in my bag, but European jeans.
In 2001, September 11 happened, and our Swedish colleagues decided to create a series of Angels of Hope, which they planned to install around the world. The project was born in the inclusive workshops of the very city — Yarna, where I went. That’s why they asked me to help instal an Angel. At the same time, Johannes Marcey and his colleagues traveled to Yekaterinburg to hold a seminar for 60 people from all over Russia at the Children’s Art School No. 4 “Art Sozvezdie” (“Art Constellation”). This school was one of the first in Yekaterinburg, that had started to work with children with disabilities.
For three years we have been studying Curative Pedagogics, which includes an understanding of the so-called trial method. It combines art, work and constant learning. If a person learns constantly, works and engages in arts, he gets an understanding of the comprehensibility, manageability and meaningfulness of life. Also it was important for us to develop our own intuition in order to intuitively learn to find an approach to a variety of “special” kids. It was a serious training: for three years we gathered at the session and literally occupied the school in holidays, we’ve spent days and nights there. In 2004, all participants confirmed their diplomas.
— Was that because of training you decide to open the “Blagoye delo”?
Thanks to it, Svetlana Zub and I, who later also became the founder of the organization, began to teach a class of Curative Pedagogics at school. We did the theatre performance with children with disabilities: mostly we put on stage plays related to the annual circle, we tried to develop speech and social skills. But it was the guys themselves who inspired us to create workshops for adults with disabilities. By the time the seminar ended, the students of our class had grown up — some were 18 years old or older. Then we realized that they had nowhere to go to work and develop further. And so we decided to do something.
Me and five of my colleagues, graduates of the seminar: Nikolai Pankratov (Vera Igorevna’s brother. — Editor’s note), Svetlana Zub, Anastasia Pokidesheva, Elena Kuzminykh, Natalia Savina — founded the “Blagoye delo”. We immediately decided that this would be a scientific and practical organization, because inclusion needs to be studied and practiced. So we became a scientific, practical, socio-pedagogical association – the ANO NPSPO “Blagoye delo”. Kolya, my brother, came up with the name. On June 30, 2005, the association was registered.
We registered it, very well, but we didn’t know how to work with it. We were all teachers without any money. Back then there were no funds, only the desire and understanding that inclusive workshops for adults with disabilities should be done, and a clear belief in a bright future.
— Why did you head the organization?
Circumstances have shaped in such a way. At that moment, it was only me, who did not need to earn money for a while, but nobody else could quit work. So I had to go deeper and carry everything on myself. I quit, and for a whole year I had no profit, only support from my family. The other co-founders of the “Blagoye delo” helped me after their job hours.
— As far as I remember, you got the premises for the “Blagoye delo” after the installation of the Angel of Hope, is that so?
Not quite. We searched for the premises for a long time, it’s true. Elena Krushinskaya from Rossel’s team helped, at that time he was a member of the Presidium of the State Council of the Russian Federation. Thanks to her, the Administration of the Verkh-Neyvinsky settlement gave us the building. It was a half-abandoned kindergarten. Where the woodworking workshop is now located, once partridges and muskrats lived. Back then, we used the premises on a free-of-charge basis and paid only for utilities. But then we managed to win a grant to finally buy out and renovate our house.
Later, Elena Krushinskaya helped me get an appointment with Semyon Isaakovich Spector (Deputy Chairman of the Government of the Sverdlovsk region for social policy at that time. — Editor’s note) to talk about the “Angels of Hope” project. He supported us, and for two months we traveled around the Urals with representatives of the Ministries of Culture and Social Policy, Natural Resources and Foreign Affairs of the Sverdlovsk region in search of the ideal place for an Angel from Yarna.
I really wanted the sculpture to stand next to the village of Verkh-Neyvinsky (That’s where the workshops of the “Blagoye delo” are located now. — Ed.) on the Seven Brothers Rocks. But for various reasons, it was not possible to install it there. As a result, we come to an agreement with the administration of the “Olenyi ruchi” nature park. While all the approvals and installation were going on, I met with representatives of the ministries of the region, and in the future many doors were opened for me, because I was no longer an outsider.
— Did you think that you would remain in the position of director general of the “Blagoye delo” for 18 years? It’s a lifetime.
Not at all. It’s not easy, I have a lot of problems to solve, but I know that you just can’t abandon that cause, only transfer it. It has always been important to me that young guys come to the team who would understand our values. And now they have grown up — there is a person in the team who, I hope, will take over this in the near future. It needs to be decided, but I am sure that he will succeed.
Managing a non-profit organization is not as simple as that: there is not much money, even to pay salaries. In the future, I want the team to have sustainable financial flows and an understanding of the future development. Then we would calmly develop workshops, study and not write permanent grants, because it takes up a lot of resources. I think it will be possible soon — the laws have changed, there is even a law on supported living, on employment and quota jobs, which is great.
My dream is to hold again educational seminars for the training of curative education teachers. So far, we cannot hold them, since the organizations must have a mandatory license for educational activities, and for us now the most important thing is to help children and adults with disabilities, and we have no resources to get a license.
— How do you assess your path, the moment where you are now?
I have a huge inner gratitude to people, life, the world, my family, and everyone who supported me. Whereas before, I had constant inner anxiety, fear that this was all a gamble, a constant feeling that you weren’t trying hard enough. At the same time, many people said: “Why are you keep on doing that thing in such conditions? No money, no resources, how can you live like this?” But it was always very interesting to me, and what’ more I felt that it was the right thing to do. We’ve survived several crises: coronavirus pandemic, then the most important sponsor left us, and it was because of its help we could flourish and not to worry about paying salaries. At such moments, it seemed that all four legs of the chair we were sitting on were cut off, many specialists left, since we could not pay their salaries, but some of them remained, and the guys stayed with us. That proved that our activity was important and essential. We slowly began to recover, a new breath opened up: we began to write grants, talk more about ourselves, and engaged in production at a different, higher level. And after all everything worked out, we are still here.
Although I’m not proud, because I think that, probably, it could have been done even better… And at the same time I think how lucky I am. For seven years I cared about children with disabilities, and since 2005 with adults, and I miss it. I used to work directly with those guys as a teacher, but now, as CEO, I communicate more with society, talk about the problems of people with disabilities. Our masters support me, and when we do something together, it’s such happiness!
— How do you see the future of the “Blagoye delo”?
I want the work to be stable and systematic, and we wrote grants not to support activities, but to develop. The “Blagoye delo” should not be an exception, the situation when people with disabilities themselves can influence the development of their city should become normal. It is necessary to create such conditions so that any person with any disability can be a desirable part of society.
My dream is that every district of the Sverdlovsk region has a systemic organizations helping to organize the life of people with disabilities. And it is up to us as an experienced organization to help — I have specific ideas about it. I don’t understand yet where and how to get resources, but when everything in the “Blagoye delo” is stable, I can start looking for resources to ensure that there are more and more organizations like us. And the “Blagoye delo” would be a resource center that trains, helps and transmits its experience, together with other teams we would interact and strengthen each other.
In the last seven years, after we’ve conducted, many non—profit organizations appeared, and they did not exist before: inclusive theaters, workshops, apartments for supported living – it’s heartening to see that. Probably that is our contribution.
— What would you like for yourself?
I am very interested in teaching. I would like to have the opportunity to practice art with the guys, organize festivals and meetings that would connect people in different places of the globe. I really want to work with colleges and universities which train specialists for research in the field of inclusion. I’d love to write a PhD thesis — it is important for me to summarize my knowledge and return to teaching. After all everything had started with it, with the desire to learn how to work with people with disabilities, then there was strong-willed work to create an organization, and then the unity of different people. Now I feel that a new round is coming in my life, I really want to know what is happening in other places, what are the other ways. I want to master new and necessary knowledge for the Urals.
