Darejan Mghebrishvili, Tbilisi
”I always loved nature, climbing the mountains. I’m thankful to my parents for everything they gave me; they never told me to stay inside, rather do what I loved. I always wanted to be a geologist and I’m really happy that my dream came true. I was studying engineering and hydrogeology, but geological engineering turned out to serve me better and that’s where I went to work. Now I have my engineering and geological research company I founded in 2012.
Everyone’s always surprised to see a woman geologist on the field. However, there were other girls in my group. After I finished university, I worked in “Sakkalakmsheni”. In the 90s everything changed, but I was always able to find work. At that time, I worked on projects of Kintsvisi, Poki and Bodbe monasteries.
My mother was 44 years old when she gave birth to Paata. It was an unbelievable story. She couldn’t understand what was happening. Until she visited the doctor, she was sure she had menopause. She was already 7 months pregnant. It was not obvious at all, she just slightly gained weight. My older brother and I, who was already 20 years old back then, were very happy about it. Of course, we didn’t know in advance and didn’t expect that the baby would be born with Down syndrome.
Considering that Paata didn’t have any organic diseases, he was a very healthy baby. But we still went through some hard times. Special people don’t get to live very long. Paata is now 50 and every time he has some health issues, everybody tells me, he’s still healthy and looks good because I took great care of him. But he is my little brother, doesn’t matter how old he is, and I want him to always be healthy and happy.
The medical field wasn’t developed back then. They just told my mother, he was not an active child as he should’ve been, but we still didn’t expect his diagnosis. We couldn’t see it and it was not obvious either, because there was no information available about this syndrome. My mother was very annoyed by the attitude of the society – pointing fingers, laughing, staring at him… But I was not bothered by it. I always told my mom, ”this is their problem mom, don’t worry about it”. But she was still very worried. We didn’t leave Paata at home, he didn’t miss any performances in theater or in the opera. If there was something he could understand, he was always there to attend.
Paata went to special school and graduated 8 classes. I often picked him up. There were children with different disabilities – some of them were not able to learn anything, but they could work. They had handcraft ship lessons, they learned to typeset and then they got jobs. I don’t know where they are now, or how’s their life.
I was always very proud of him. Everyone is crazy about him, he is such a lovely person, that everybody falls in love with him right away. As I mentioned, my mother was worried about the attitudes that we can see in our society, but I didn’t pay attention to it. I never even noticed it. So Paata was never locked in the house, we were always going places. Now I don’t do that as often as before, because my current work doesn’t give me any vacation.
However, we have been through very difficult periods. At the age of 30-35, he had nervous breakdowns. He was screaming all the time, breaking everything he saw around, but he himself didn’t realize it. This period was hard for us. My father was already deceased and nobody could help us. The reason causing it could be simple – somebody talking loudly or some kind of noise – and he suddenly got panic attacks. The only thing I could do was that I could get behind his back and force him to lie down. At that time he was not taking any medications and when he was at least slightly calmed down, we gave him one. Nowadays Paata is taking his medications on a daily basis. He’s registered in the psych neurological dispensary and we get those pills from there. I have to say, that the illness he had this year was caused by those drugs and from the general negligence that people with this syndrome get.
When Paata was a kid, we got some government support. In general, our government doesn’t take care of disabled people. There are some services for children, but unfortunately, absolutely none for adults. When he was little, we took him to the center where they gave him free drugs once a month and that was their whole help. Now, Paata is getting a disability pension, and even that’s because we raised our voices about it.
There aren’t any other services that would be helpful. These people need help on a regular basis, social workers or any kind of help, so that I could get some break and someone helped me. I want to go to Europe as others do, have a vacation, but I can’t leave these people alone. In fact, I’m their doctor, even though I am a geologist by profession. I have learned so much in these years, I can take better care of them than a real doctor.
I’m taking care of my 94 years old mother and Paata. Also, we have a 93 years old aunt. When she is feeling sick, we bring her to us. She rather prefers to be in her home and when she feels better, she goes back to her home. Besides the fact that I’m helping them financially, they still manage well themselves. They try not to bother me with small things. My mother has suffered a lot last year, but she still tries to take good care of Paata. Since he can’t take care of himself, my mother is trying her best to do everything she can.
I would like to tell more about social services – in 2005 we had to prove guardianship for Paata wit the power of the court, otherwise, he would not get any pension or medications, because I’m the one getting drugs for him as a trustee. The case was open for a year. The lawyer requested $400 to fix the documents. I couldn’t give him such a huge amount of money, the pension was only 20 GEL back then. I said I would do that without spending a cent, but it took me a year to complete my goal. Since I didn’t have a lawyer, every time I would go to the court with prepared documents thinking I have completed the process, suddenly more documents were needed to be done again and again. Anyways, nobody explained to me how to do that, that’s why I had to go there a bazillion times.
Three years ago, our Parliament adopted a new law – ”guardian”, which they now say is a very humiliating term for a disabled person. “Supporter” is a correct word for it. That was the reason I had to change every document required by the court. I started to collect documents, prove that I don’t have any convictions, I’m not drug addicted, and before I could collect all the documents, some of them already expired. And I paid for every document. A new examination was necessary. At that time, Paata was feeling so bad, he couldn’t even stand on his feet. But I didn’t have any choice, I had to carry him myself on the stairs and floors. The worst thing is that I get that ”guardian” status for 5 years, and I’ll have to go through everything over again.
Paata has already trouble to move and unfortunately, we can’t go to the theater anymore. He loves “Keto and Kote”. Every day starts with “Keto and Kote”. He loves visiting people as well and when I have time I always do that. He is very excited when someone visits us.
I want to have a small and beautiful house in the village with a yard, where I can bring my mom, aunt, and Paata. They would be around nature, flowers, grass and fresh air and I would get a chance to rest. This is my dream.”
Author: Nino Gamisonia
Photo: Salome Tsopurashvili