Lia Tabatadze, 34, Tbilisi
„Teodora is 6 years old, she goes to a kindergarten and the Portage Association of Georgia, where she has been involved in the Early Development Program since she was 2-3 months. She is already finishing the program and will go to school, but we have not decided yet which school she will go to. This is a bit difficult question because of the quality of inclusive education. We have gained a lot of experience for 6 years. I have grown up together with my child.
I must confess, and I’ve never hidden this fact, that I did not know anything about the Down’s syndrome when Teo was born. My stress and fear came mostly from my ignorance. You are shocked at first because you are not aware of your condition, cannot find the reason for being in this condition, you wonder whether you have done something wrong and experience other feelings associated with stigma. A thousand thoughts ran through your mind wondering where you made a mistake, but in fact, you have not erred at all (!) This just comes from the diversity of nature. Like there are not two similar leaves, you will not find two persons in the world who look exactly the same. This is one of the expressions of the diversity of universe. I found out that the Down’s syndrome is not inherited, it does not just happen because of mistakes or pregnancy complications, or other reasons.
All the information and knowledge about these issues, I acquired on my own. I have learnt many things since Teo was born. First of all, I have grown as a parent and as an expert. I can say today that I am an expert on many issues related to disabilities.
I had my first feeling of protest when I could not find any photos and stories of Georgian children. I noticed that on foreign websites parents were very active and shared a lot of information. Therefore, the first thing I did was to open a Facebook page Down’s Syndrome. I wrote about my daughter and posted her photos. She was a few months old then. Many people made their comments, they liked and shared the material… Then I found out the organization – Union “Our Children“- which was founded by a parent like me. The same person, Nino Tsintsadze also founded the Portage Association of Georgia and introduced the Early Development Program. We became friends and have worked on projects together since then.
Our work focused on raising public awareness. This is how we started marking 21 March, which was declared by the UN as a World Down Syndrome Day. Initially campaigns were smaller in scale; there was not much interest from media either. That annoyed me very much. We called and begged them to come and cover the event. Even if they came they made stereotypical stories. We gradually learnt how to communicate correctly with the media and taught them how to make stories. The media has developed as well. This year’s campaign was unprecedented. We did not pursue them, on the contrary, they pursued us and asked for press-releases.
Of course, in the beginning, it was not that simple for parents to talk about it openly. We all have got used to hiding such things. Many parents found it difficult to break silence. Nor was it easy for me. My cousin was the first person I told that Teo had Down’s syndrome and, I remember, I hardly managed to do that. As if someone pulled the words out of me. I could not believe it until I had the diagnostic report in my hands. And the way they give you information… For example, one of the geneticist told me directly that I should not have any hope. He told me that my daughter would not be able to recognize me and even call me ‘mother’. Teodora started receiving treatment from the age of 4 months. Later I found out that there was nothing to be treated. You cannot do anything with this chromosome. I guess that this is a business for some doctors to make money by shocking parents. He even used to tell some parents: “Your child is a mistake of nature and the God should not have let her be born”.
Mothers in Georgia do the things the State is supposed to do. Yes, we have changed the public attitude and environment for the better future of our children. The state should support single mothers, especially the mothers with disabled children. The state has not supported me anyway. I live alone together with my two children. Their father refused to take any responsibility and left the country not just the family. I have handled so many things alone. I have to fight against the public, doctors and the education system and at the same time deal with numerous personal problems. Imagine a single women with two minor kids, who lives first in a rented and then in a mortgaged apartment and has a nomadic life. I used the leave the house at 7 p.m. in the morning and come back at 12 a.m. because I worked at different places and was also involved in public activities. Without the help of my mother, I would be socially vulnerable and even could end up in some asylum. My children and I would be doomed in this country. This often happens so, I was just lucky to have my mother and supportive family.
Employment of people with disabilities is one of the greatest problems today. That is why, we set up Babale, a social enterprise, about two years ago and have gradually gained a footing. It is rather difficult because we focus on children with intellectual disabilities and developmental delays, which is the most vulnerable group. We have to work a lot to help this people develop vocational skills, learn time management, performance of work, etc. in order to give them job. In short, we have to deal with many challenges here but we have developed and helped them develop too. We already have a store and our own workshop. We primarily make holiday accessories and everyday items. We have many interesting plans and hope that we will be able to implement those plans.“