Tamar Naveriani, 26 years old, Mestia/Tbilisi Sopiko Lobzhanidze, 58 years old, mother
“Tamuna was born in Svaneti. Her problem is directly related to the fact that we lived in the mountains and there wasn’t a rehabilitation center or a specialist who would diagnose Tamuna and prescribe treatment. After the injury during birth, she continued development with cerebral palsy and mental retardation. From my observations, there was something wrong, so I brought her to Tbilisi, although treatment was already late. The diagnosis was made when she was 10 months old. The problem was serious – the skeletal system wasn’t developed and there was a hemorrhage in the brain so the child needed a continuous therapy course. Imagine that period: the horrible 90s in Svaneti – shootings, robberies… For 6 years we had to go back and forth the Svaneti-Tbilisi road several times a year to take a 2-3 month rehabilitation course in Tbilisi. You had to know someone to get a place in the helicopter that transported people from Svaneti to Tbilisi. So, we often weren’t able to get on it. Therefore, with difficulty, but we still managed to treat Tamuna in Tbilisi on such a long and a high-risk way. The treatment was multifaceted: massage course, the logo pad, therapeutic development. These years have been one of the hardest years of my life as a mother.
I was born and raised in Svaneti. Now I live in Tbilisi. I had problems with my spine and that was the reason I had to move. I often talk about my diagnosis with my mother. The fact that I’m different was very painful when I was in school when I realized that I was having a harder time learning than other children. The only ones who helped and supported me during this time were my family – thanks to them I got a basic education in mathematics, Georgian language, physics, and foreign languages. In the school they had no idea how to approach a child like me, nor was there a special teacher who would make my studying easier. I also had a difficult relationship with my classmates. They couldn’t stand me, they were constantly laughing at me and abused me. Because of this, I changed 4 schools, but I couldn’t feel the right attitude towards me anywhere. I remember very painfully, in one of the schools, how the boys threw me on the floor and beat me with bags. The teachers didn’t interfere much, they just gave small remarks and that was all. But when my mother was looking for schools, she made the choice based on inclusive teaching.
The school years were the hardest for both of us. I was involved in my daughter’s development, my husband and parents also stood by me. In the process of raising and developing Tamuna, everyone at home was equally involved – my mother taught her foreign and Georgian languages, my father – physics. However, at some point, everyone got tired, couldn’t see the perspective, and didn’t believe in further development. I continued to work with Tamuna alone, not losing faith. My husband thought that I was delusional and overly optimistic about Tamuna’s development. In fact, Tamuna had potential from school age, and that potential needed to be developed.
Tamuna received her pre-school education in a specialized kindergarten in Tbilisi. After the assessment, I was told that she would even be able to directly go to the second grade of normal school. At that time inclusive education was introduced in several schools and Tamuna was transferred to the 6th German Gymnasium. It was difficult for us to drive her there – we lived in Temka and we had to go to Vera every day. However, inclusive teaching turned out to be a facade – inclusion only meant the fact that children with special needs sat in the classroom with typically developed children. They didn’t know the methodology that would make it easier for Tamuna to understand the difficult program. She didn’t have a special teacher and caring for her development still fell on me. I continued working with Tamuna again and did the work that’s usually the state’s responsibility. This obligation is also defined by law. In search of a full-fledged inclusive education, we switched four schools. Recently I even tried a paid school.
For me, it was very hard to face the stigma, on one hand from the school administration and on the other – from the parents. I remember once the director of the private school called me and asked me strictly to take Tamuna’s documents and transfer her to another school because the parents protested Tamuna learning alongside their children as if Tamuna was hindering the development of their children. It was very insulting to me, but I couldn’t fight against the director’s power and I had to find another school again.
I have a certificate that I graduated from 9th grade. I didn’t want to continue my studies at the university because the school didn’t give me the relevant knowledge and education. I received the skills needed for my independence in my family. Earlier, my mother had to speak to people for me, but now I can do everything independently. After graduating from school, I’ve been thinking about what I could do to have my profession and what’s most important, to get income from that profession, but I couldn’t see my future.
I was advised that vocational education would be the solution and I went to college, where I was taught handicrafts and got a diploma as well. But they couldn’t help me get a job and a sedentary job is also not good for my spine. I also went to an art school for a while, where I was taught by inclusion specialists, and only then did I understood what it meant to have my needs considered at the school. True inclusion gives great motivation to the child, time the teachers try to discover your skills, help you follow your desires and abilities, which then give you the opportunity to work. With such teaching methods, children develop better, become more motivated, and become more successful.
Later, I started working at a day center where they had kids with heavy conditions. Here I realized that my inspiration is to work with people with disabilities and to help them. I worked there for two years – helping children in wheelchairs walk, eat, constantly contacting them, even if they couldn’t speak. As a result of my experience, I understand children with disabilities much better– despite their skills, they also constantly need to talk and play, which helps their development.
By the way, I also have experience working in a cafè – I directly offered the manager in ‘’144 steps’’ to hire me as an assistant. I did simple tasks – I cared for the plants and helped with the chores. But I was still looking for something that could become my favorite activity and also bring me income.
I found myself and my future profession in a specialized studio “Azdaki Garden”. I was lucky to meet such a specialist who discovered my capabilities and showed me the way to use it. In the studio, with various arts, I’m undergoing dance therapy with Ana Gviniashvili, who knows how to work with young people like me. The main thing I haven’t felt in school before but felt here is that I’m involved in the process and my opinion is taken into consideration. Now I see my future and I know exactly what I’ll do – I want to become a choreographer and continue working in one of the inclusive kindergartens. I can communicate more with children with disabilities, I know what they need, and I know I’ll be a good dance teacher.
As it turned out, we were finally lucky enough to meet professional people. Tamuna’s dance teacher, Ana, has acquired knowledge about inclusive education in Germany. With her help, Tamuna found her own interest and vision for the future. This is also Tamuna’s merit – she is a person who is a constant search.
Unfortunately, the state lacks a unified vision. Inclusive education is only written on paper and in fact, neither schools nor vocational schools have knowledge about the inclusive approach. They treat everyone equally and don’t consider the special needs and interests of the individuals.
Unfortunately, the state doesn’t notice mothers like me either. When you have a child with a disability, family, and profession, like in my case, you are constantly forced to make a choice – either you have to completely refuse your personal life and raise a child, or your child has to miss out on something because the system doesn’t guarantee such children further development. Because all I thought about was Tamuna, I had problems with my other children. Life would be much easier if I had an assistant. In western countries, parents of children with disabilities receive a monthly guardian’s salary – the amount is used to either hire a professional assistant or is paid as a salary to the family member who works with a child. This is a great benefit for the family and the individual work with the child is also much more productive. Until the age of 5, the therapies were free, after that it becomes the parent’s responsibility to take care of the development and it took a lot of time from me. As a result, I was always forced to make a choice.
It’s also important to introduce parent’s education systematically. In most cases, parents inadvertently hurt their children themselves because they don’t know how to deal with a particular problem. I personally, because of my lack of knowledge, delayed Tamuna’s therapeutic intervention. I couldn’t recognize the dangers and symptoms from the beginning. Therefore, a parent needs help from the very first months of parenthood – what to do, which way is better, how to behave.
Employment of people with disabilities is also part of the systemic problem – when the state doesn’t take care of the child’s proper development from the very beginning, in adulthood these people have difficulty socializing and developing skills. In addition, there is an ingrained stigma in society that people with disabilities can’t do anything independently. For society, such people are outsiders; for them, they are a deadweight and not a resource. However, the state can use this resource, so that people like Tamuna aren’t constantly fed with a pension, but have their own, fair income.“
Author: Maiko Chitaia
Photo: Geda Darchia
Translation: Mariam Kajrishvili
The project is implemented with the support of UN Women and with the financial support of the Joint Fund for Sustainable Development Goals, within the UN Joint Program – “Transformation of Social Security for People with Disabilities in Georgia”.
The views expressed in the publication are those of the author (s) and do not necessarily reflect the views of the United Nations Women or the Joint Foundation for Sustainable Development.