Written as part of Bodler Giving's Global Givers initiative by a regional partner.
“Mom, why is he so big and yet unable to talk?” My four-year-old son is looking at me with all the trust and sincerity the children at his age are capable of. We are sitting in the yard of the Center for Children and Young People with Developmental Disorders “Saint Panteleymon” in the village of Vidrare, and I am introducing him to the children there. This is his first visit here and his first encounter with children with disabilities. Or rather he “collides” with them, and I can almost see how his tiny brain is hectically trying to find a place in his four-year-old well-arranged world for everything he is seeing.
We start searching for it together, gropingly. I say: “Have you ever seen two children who are exactly the same? Even twins are not identical. All children are different – some of them are white, others – of colour, some have blue eyes, others – like yours. Some children cannot talk, others – don’t stop chattering. But all of them are very much alike in quite a lot of ways. For example – all children like ice cream.” “And chocolate” – adds my son with understanding. Three years later he doesn’t have problems with those who are different - as we have a lot in common with them.
The Center in Vidrare is about an hour driving from Sofia (the capital of Bulgaria), close to Pravets, where about 90 children and young people with special needs live. “Special needs” is the correct term. The building is well-maintained. The yard is clean and green, with swings and a play-ground which quite a lot of kindergartens in Sofia would envy. The team and the director have chosen the best strategy for an “institution” like this – the policy of “open doors”, literarily and figuratively. Anybody can come whenever they want and see the children, play with them, speak with the staff. A few international foundations work at the Center. The children travel to participate in festivals, including international ones; winter and summer camps; and constantly welcome guests. After the fearful findings about the Center in village of Mogilino and the subsequent inspections by the Prosecutor’s offices in all institutions with similar activity, the Center “Saint Panteleymon” in Vidrare was acknowledged as one of the best examples to follow. The Center itself is the biggest employer in the village – the staff is mainly local, and the local school relies on the children from the Center to enroll sufficient students.
These are the facts. Behind them try imagining the Center in Vidrare as a bridge between the times when the children were kept, although satiated and well-dressed, in relative social isolation, and the present when the state experiences difficulties to provide for the children’s essential needs while at the same time is in pursuit to de-institutionalize and integrate them.
I reckon that the management of the Center has achieved the maximum considering the financial, human and normative limitations, as well as in their efforts to bring these “hidden children” out of the village boundaries. Those children shine with light and are ready to accept the “others”, the outside world. However, I am not so certain about the willingness of the system and the society to accept them.
The Center in Vidrare is a snapshot of our tolerance as a society. Behind the sunny facade there are a quite a lot of shadowy stories – generally of people from the “outside.” Stories like the one in which doctors from a big hospital in the capital refused to admit for treatment a child from the Center with a serious flu due to his main, also severe, disorder. Or other stories where an ambulance called for an epileptic fit arrived too late. Or of a hotel manager who asked the director not to bring the children to the pool because the guests “felt uncomfortable.”
The Center in Vidrare poses a question to the system – “What do we do and how to manage children with special needs, deprived of parental care?” “De-institutionalization” is the word of the day, funded with millions of Euro by the EU. Taking children out of closed and “hidden” institutions and integrating them in an environment close to their families, in towns with access to different social services, to schools where they could study with other children, assisted by resource teachers – all this looks like a good framework. However, more questions are coming up. Starting with the emotional issues – the separation of the children, who have already established a strong community of mutual care and support, in order to be de-institutionalized and sent closer to their families who are strangers to them and furthermore who had previously gotten rid of them. And finally – the most important issue: lack of specialists and the insufficient motivation of the few practicing.
It turns out that we train an insufficient number of special pedagogues, speech therapists, psychologists and social workers who are willing to work with children with special needs. And indeed only half of the students in the specialty “Special Pedagogy” at the Sofia University complete their studies in that specialty. Half of those graduates are students from Greece and Cyprus, who do not practice their profession here, in Bulgaria.
Thus in 2010 the “Vidrare” Group was founded. My colleagues from Class of 2010 at the Bulgarian School of Politics “Dimitry Panitza”, became part of the group thrilled by the idea to bridge the gap between the children and students. The project for joint work was launched in the middle of 2011, with the support of the Bulgarian School of Politics and funds raised at the Charity evening for our graduation. After that, our initiative was supported with a small amount by a charity trust from Gibraltar – the Bonita Trust. The successive cohorts of the school gave their support to our cause by including it in their charity events and fundraising for it. We are also donors of the initiative – we donate money and dedicate time. Our project is not ambitious, demonstrative or heart-rending like most similar initiatives are. Our project is focused and most importantly we do everything from our hearts. We formed a group of volunteers – students from the specialty “Special Pedagogy” at the Sofia University and bridged them with the children from Vidrare. Both communities need each other. The university students, who worked on field on target projects for art-therapy with entry and exit testing under the guidance of head assistant Penka Shapkova – Taneva, as early as their 2nd and 3rd year of studies at the university, had the opportunity to observe real case studies and provide care and therapy. And the children of Vidrare received along with their usual presents another one, much more valuable - target therapy for improvement of their verbal skills, concentration and expression. We, the members of the group, also changed a great deal. We realized the importance of changing the attitude towards these children. We learnt to donate – our money, time and efforts.
This is a very small step compared to the enormous challenges of the integration and acceptance of these “hidden” children, but it is still a step ahead. The most valuable is the sensation of mutual indispensability and importance. The children were not an object but an active partner of the university students, who not only received training, but also learned from the children. Bridging needs – this is the shortest definition of the project of Class of 2010 of the Bulgarian School of Politics in Vidrare.
I believe there are many bridges that are worth building and supporting between the children with special needs, the system responsible for them and the society.
The conversation with my son in the yard of the Center in Vidrare was not the beginning of my personal bridge. My “beginning” dates well back in the past, when my mom with her typical soft explicitness told me: “Look, all humans, without exception, have dignity and you must learn to respect it.” My “beginning” was with Nadya who lived on the first floor of our building and was “mentally retarded”. At the beginning she was playing with us but year after year she was slowly changing and then suddenly disappeared. She was sent to her grand parents’ village because her condition had worsened. Many years after my mom told me that she hadn’t survived her 16th year….
I look back at those personal stories and I did start with such a story for a reason. I strongly disagree with the statement that we, Bulgarians, as a society are insular and that the past 60 years have made us even more intolerant. Firstly, because of the leveling and uniformity, which threw overboard the ones who stood out, and then – because of the social and at times economic maze, which have made us indifferent to anything else but our personal survival.
Vidrare, my childhood stories, my son and his conscious reactions towards different people make me believe in the strong roots of the Bulgarian tolerance which should be protected and encouraged, starting from the four-year olds and finishing with the politicians. Or rather vice versa – starting from the politicians and finishing with the four-year olds. It is my strong belief that a change is possible that keeps me going.