Mariko Kobakhidze, 35 years old, Tbilisi
‘’I was completely healthy until I was two years old. When I was two, I started having high fever, doctors in Georgia couldn’t tell what was wrong with me and a year later I was diagnosed with rheumatoid arthritis in Russia. In Georgia, every tenth elderly person has this disease, but I got it at an early age and after some time it had progressed to difficult forms. I could move independently until I was 15, but it was possible because of treatment that was very hard on me. Sometimes I even joke that there were methods used that could equate to torture and inhuman treatment. I was taking treatment therapies in Russia.
Then I had to stop the treatment because a visa was required to enter Russia and we were no longer allowed to visit the country. The second factor was that I was tired of the life of a patient and refused to continue the treatment. This slowly caused me to lose the ability to move independently. Normally, I should have used a wheelchair, but I couldn’t see myself with the wheelchair and I told my family that I wouldn’t go outside with it. My attitude to a wheelchair has lasted for 10 years and I regret it very much – the sooner we accept ourselves and learn to live with what’s necessary to stay mobile (which is important for our independence) the better.
My family decided that I would graduate the first school and then university carried in someone’s hands. For ten years, I struggled and so did my parents and my brother. My mom and dad alternated with each other, who would lift me. My lecture room at the university was on the third floor, but the saddest thing is that I didn’t realize that I had my rights. I was studying law but didn’t know how to protect my rights in life. When I graduated from university, my family didn’t want me to be locked at home, they wanted me to start an internship somewhere. My father asked at his job for an internship for me, and then the head of the city council declined this request. Probably due to the stereotypes that exist in society toward people with disabilities. My father decided to start his own business and get a job for me there as a lawyer. And I had to go to work every day.
In the municipality where I lived, there was a humid climate and because I have rheumatism and my bones become sore a lot, we were forced to live on the other side of the tunnel. We decided to move to Tbilisi. At first, my mother and I moved here, my father stayed in Samegrelo because it was difficult to find a job here. It was then that I realized that life could no longer continue like this – my mother could no longer carry me alone and I decided finally to sit in a wheelchair – it was a very difficult time for me.
The situation is relatively better now, but ten years ago it was a very bad situation in terms of attitude towards people with disabilities. The first time I went out on the street, a citizen gave me some coins – he thought that I was a beggar. When I asked if he had dropped the coins, he answered with a question that if I was not a beggar, why did I go outside? There was another case I’ll never forget – a young boy suddenly threw a lighted matchstick at my lap and told me that people like me are shaming our nation and that I shouldn’t go out. There were many such incidents and psychologically it was very difficult for me. My mother was asked if she had another child other than this ‘’sick’’ child (me), and when they found out that she did, they wondered – then why would she take care of me, if there’s another healthy child and moreover, when he’s a boy. I remember cases when I called a taxi, it came and when they saw that I was using a wheelchair, the driver would leave and refuse to service. The reason was that they didn’t want to put the wheelchair in the car because it’s dirty, or that it’s heavy, and so on. How many times was that the driver didn’t help my mother and she, a person weighing 42 kilograms, lifted the wheelchair alone, and put it in the car. We’ve been left outside many times, on a road, in the rain, in the snow… Life wasn’t easy, but I still went out; in such a condition and environment I continued my studies and I started my master’s.
All of this was because of my mother. She always believed that I would be a successful and independent person. She was my psychologist, my friend, my hands, my legs, my everything. Since I got sick, my mother and I became one body, I can say that she sacrificed her life for me. My mother died two years ago, unexpectedly for everyone. She needed heart surgery and unfortunately, she couldn’t get out of anesthesia. When I think about the pain, I can compare it to falling from a height, when all of your bones break at the same time and you realize that you still survived. Before the surgery, as if she was feeling what was going to happen, her last ask was for me to finish the Ph.D. and bring the diploma to her grave. It’s very difficult for me without her, but I try to make her last wish happen, and therefore, I continue to live. After my mother’s death, my father took the responsibility for me. However, he can’t help me with everything, so I have to hire a personal assistant since the state doesn’t have such a program. I think that the state has to do at least so much that mothers don’t have to sacrifice themselves for their children, and we must be able to independently achieve something that is achievable for children or adults without disabilities.
People often wonder, when I say that society doesn’t accept people with disabilities. They’ll smile at you, laugh with you, but think that you are a pity and they don’t perceive you as a fully realized person. This is a huge problem and by the way, this problem is more acute for women with disabilities. I have male friends with disabilities, who find a place in society more easily. But we – women, girls, somehow find it harder to establish ourselves and to prove that we are ordinary people and limited ability isn’t an obstacle, be it in friendships, business or even in personal relationships. I think that reason for this is the stereotypes that exist in society in general in terms of gender. When it comes to women with disabilities, these stereotypes become more acute and self-evident.
We have also a terrible situation in the medical field, the doctors themselves don’t accept people with disabilities as regular patients.
When I went to the doctor with my mother, I didn’t take it seriously – my mother was my friend and I thought, okay, that’s fine if they talk to her, but now when my father is in the corridor, waiting for me and he is asked to come in, I feel protest – yes, he will not come in, because I’m the patient and you have to talk to me! They don’t have proper skills, but how couldn’t they learn over so many years?! There is not a single state insurance program which would help me, I have the same insurance as the people without restrictions, which is useless for me. I have to make research once a quarter and my regular test costs up to 300 GEL. There isn’t an adult rehabilitation program that is necessary for me so that the disease doesn’t progress… Also, I need a personal assistant. For my independent life and for me to be in an equal situation with others. I don’t ask for privileges, I ask for equality and that’s my right. In order to put people with disabilities in an equal position, it’s essential for the state to use positive equalization mechanisms. Society calls it ‘’positive discrimination’’, but in fact, positive discrimination is something else.
When I see such things, I want more and more to be active in protecting the rights of people with disabilities to change something. I don’t know what comes out, but I try my best. I’m a lawyer by profession and now I’m employed in one of the public agencies, I’m an invited member of the Implementation Monitoring and Promoting Council of the Convention on the Rights of persons with a disability under the Public Defender. At the same time, I study at the Caucasus University Ph.D. and I’m an activist for the rights of people with disabilities. The state is making some changes, but not actively. We have problems in absolutely every field – starting from the environment adaptation to the right of the education. For example, now that I’m studying for my Ph.D., I have, in fact, been forced to choose ‘’Caucasus University’’ because there are just a few universities that are adapted for me. The role of the state regarding the rights of persons with disabilities is of course huge, but unfortunately, the state doesn’t fulfill the obligations properly. They published the law about the right of people with disabilities, to which we, people with disabilities, gave feedback, but, unfortunately, they didn’t consider what we really needed, as if we were told that they wrote it on paper and now they don’t care how we use it in practice. The law for us is at this level, remains on the paper and things don’t change.
When I finish my studies, I want to be a lecturer. I wish there was a better situation for people with disabilities to find their place and I want to see more such people outside. When I first got outside in the wheelchair, people looked at me mockingly and considered me a pity, and I thought to myself that I deserved it. I’d like to tell to people with disabilities: no one deserves it, we are not a pity, we are ordinary people, who have to fight for their rights. I woke up and felt protest and it’s first thanks to my mother and then thanks to my friends around me. I want to ask people to show support and not make us feel pity. Their support would be helpful if they join us in advocacy and awareness campaign for people with disabilities.’
Author: Nino Gamisonia
Photo: Nino Baidauri
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.