Nino Maisuradze, Telavi
“Before my child’s birth, I led a socially active life – I worked in the Telavi children’s library, had a shop in the neighborhood, phone booths, and so to say, we had a decent life while other people around us struggled to make both ends meet. I had to give up everything because my child has a health problem, and an acute one at that. The first time we left hospital was when my baby was six months old, because of spinal cord hernia… This is a horrible illness. Even though I was surrounded by friends and I was not alone, I still felt lonely. It was like being lost in a desert. Yes, this is how it feels, no matter how many people stand by your side, when you face the fact for the first time, it is a terrible blow. You cannot overcome shock and don’t have a clue what to do, where to start, how to continue with life… The world comes crushing down, the whole world – you lose your job, your family, some of your friends and acquaintances, because some people think it’s contagious and stay away from you.
The doctors told me that raising such a child would be extremely difficult and offered me to abandon my baby. That’s right, this is what the doctors and even my husband’s family suggested. However, I have made my choice and I’m raising my child on my one, with difficulty. To receive child benefit, I had to fight and even hire a lawyer. The most difficult part was that I had no idea what to do. One doctor would prescribe something, and another doctor offered a different treatment. I was uninformed about this illness and was at a loss. For example, my baby was put in the harness, and I found out later that it was absolutely forbidden, and his second leg was damaged as a result. I did not know whose advice to follow. I was on the lookout even in the public transport to gather useful tips. I collected some information in the minibus, I would apologize, and tell them my child too had a problem and I didn’t know where to go, whom to address. Then I happened to go to a rehabilitation center and found out that parents of such children were quite close. It appeared that there was a kind of parents’ union in Tbilisi. I had thought for some reason that such organizations must be established by people who had medical training, but then we set up a similar union in Telavi as well. In our parent’s union, we attend trainings and have received quite a decent informal education from the organization “First Step” about how to work with our children. There we met other parents, made friends and always shared experience. We were united by our children’s problems and became close friends, because we understand each other and support each other the most. On behalf of the Parents’ Union, I am also actively involved in the local budget discussions, so that the local government does something useful for these children. Besides, we hold trainings for preschool teachers, parents, specialized teachers and others. We also cooperate with various organizations.
Non-adapted environment, the government’s attitude, treatment in kindergartens is gradually changing, but problems are still abundant. For instance there is a widespread misunderstanding in the society that when a child is born like this, it is the mother’s fault. I was repeatedly asked if I was careful during your pregnancy, and things like that. In any case, whether it is a Down syndrome, autism or cerebral palsy, the woman is blamed. Many families have been disrupted because of this, and all the burden is usually carried by single mothers. This happened in my case too…
Can you believe that in Telavi, they set up a Council working on disability issues in the local government, and it does not include a single person with disabilities or a parent of such a person? This is why they sometimes do things that do not meet any standard. For example, they constructed an accessory building for the municipal government where they claim to have an adapted bathroom. Yes, the door is wide and there is no barrier, so the wheelchair users can go inside.
However, the railing that must be near the toilet bowl is installed so far away that without aid wheelchair users cannot use it. And they think it is an adapted bathroom, having spent lots of money on it. What’s the use of such an adapted bathroom that people in wheelchairs cannot use?! Telavi local municipality staff has travelled to Poland and Sweden to share experience in these matters but I don’t know why they go on these trips if they cannot bring back any useful information… They claim to have developed an action plan, but where is it?! No one has seen it. They opened one shooting gallery and have gloated about it, but they themselves have fun there. Only two schools are adapted in Telavi and there too you can only go on the ground floor. My child cannot attend sports classes, because you have to go down seven steps to enter the gym. In the first and second year of school, I would pick my child up but after that I could not. Pediatricians sitting on the second floor in the clinics, and many other problems, are a separate matter of discussion.”