Special revelation. Chapter 2: Pain, rejection and socialization (part 1)

The year 1991 was a time of change. Ukraine became an independent state with huge dreams for a brighter future. However, people were not ready for the mass reappearance of parents who had children with special needs. It was a shock to them as the society had believed it was “clean and healthy”. Our relatives also began to fight for us to have a barrier-free future. A moral war began for the right of people with additional needs to live like everyone else.

1946 was the first year of peace after the end of the World War II, when the “cleansing” of society started. War veterans and amputees were deported to Valaam Island in Russia en masse in order not to spoil the image of a healthy and physically perfect society. On Valaam Island they were placed in boarding houses swarming with rats where they suffered from cold and hunger. That was all the gratitude the nation and Joseph Stalin showed them for their heroic deeds. 1973 wasn’t better. The families which had children with special needs were given apartments on the highest floors in buildings without elevators. All in order to shield society from people who were “different”.

The nineties were a period of humiliation for me and my mom. Once, when I was a year and a half, we walked down the street. My mom was pushing me in a pram. Walking past a portable chicken stall, she decided to buy some and make chicken broth for me. There was a long queue, and she asked people to let us go straight to the front because of my physical condition.

Instead she heard a response from a woman around 60, “Why did you give birth to such a child?” My mother was so upset she wanted to stuff that chicken down her throat. Regretfully, in those years such humiliation was common for every parent with a special child. Even I remember the day when one of the hobs in our electric cooker broke down, and we called a technician to repair it. When the technician came and saw me he suggested my mother put me in an orphanage, and even gave her a few addresses. We found ourselves in such situations quite often.

There was also a lot of expert advice from doctors. Such as that I would live only five years because I had a genetic disease. Then it was “only 10, 15” and so on, as if they were playing Russian roulette. Despite all the “excellent” medical advice, my mother fought for my physical and moral well-being. Physically, the most painful things for me were the B1, B2, B12 vitamins, and adenosine triphosphate injections I had at the children’s hospital. I also had numerous other vaccinations. The culmination was the psychologist’s “verdict”: when I was five, she said I was cognitively impaired; unfortunately, that was a label given to many impaired children in those days.

Indeed, there were plenty of difficult moments in my life, but there were good ones too. For instance, the parents of a child with special needs were entitled to a free car (a Tavria) and an apartment (it was a social benefit from the government). So in 1993 my mom was registered on a special waiting list to get those (the lists were long, sometimes it took people ten years or more to get a free apartment). Besides, parents of children with special needs began uniting in each district of Kyiv and forming support groups. Eventually, the organization called Cerebral was created. With the help of this organization parents could make themselves known to the authorities, defend their rights, collect gifts, organize holidays, or get vacation vouchers to take their kids to recreation and rehabilitation resorts. In our district Cerebral was headed by a mother of a girl with special needs. Tetiana Badun, who had a son with special needs, became her assistant. She invited my mother to join Cerebral.

After her maternity leave expired, my mother quit the department store and worked as a house janitor. Housing Cooperative #413 assigned her to clean our 16-floor building and four others in our block. Every day my mom woke up at five in the morning, took a bucket of water and a broom and went to clean the building entryways where cobwebs, feces, urine, blood and other debris were waiting for her. The scariest thing was that she, like every janitor, had to beware of drug addicts and rapists. But despite all these risks, Natalia worked to make sure there was food on the table, toys and clothes for her son. During the day, she went shopping for food and ran from pillar to post, while my grandmother Svitlana took care of me and helped my mother around the house. Sometimes my grandmother had to leave because she was called to the shoe factory where she worked as a packer. My grandfather Grysha worked as a carpenter, and my uncle and godfather Vitaly repaired trolleybuses at Kurenivka Depot #4.