Nino Kiknadze, 37, Tbilisi
„I have worked on the protection of human rights in the health care system since 2006. From my own personal experience and professional interest I have gained some knowledge about people with disabilities (PWD), especially about children, which I ultimately would like to use for improving the quality of PWD’s life and supporting these people.
I have always loved children very much but since I had my own child I have thought that they are the best and cutest creatures in the world.
On 17 January the first children’s hospice opened in Georgia. The hospice will provide care for children and adolescents with palliative care needs aged from 0 to 18. People with chronic and incurable diseases (where the medicine is powerless and the disease is expected to cause death in a certain period) require a palliative care. The hospice will help such children to spend the rest of their life without suffering from pain. The hospice will also take care of a psychological and spiritual condition of the children and their family members and will just brighten up the final days of their life.
A 24-hour service will be available simultaneously for 12 children and their parents. The day care center, where the kids and their parents will stay until evening, will also operate. Moreover, the home-based care service which currently has 26 patients, will continue working.
The idea of opening a children’s hospice came to me years ago, when I visited several hospices during the business trip and saw with my own eyes how much relief the hospice gives both to children and their parents. I always wanted to have such a hospice for our children as well. This year my idea materialized when Tsitsinatelebis Qvekana was built in the Dighomi village with the support from Open Society Georgia Foundation, Evex Medical Corporation, President of Georgia and many other wonderful people. In this hospice, children will be able to spend the rest of their life with dignity. More than 1 000, 000 GEL for the construction was mobilized through donations. The amount of donations varied from 1 GEL to 70 000 GEL.
This project has showed me how many excellent people live in my country and made me confident that unity really makes strength!
I discovered an odd practice of abandoning children by fathers in Georgia when a child is diagnosed with an incurable disease, for which the whole burden of taking care of the family falls on the mother’s shoulders. Access to hospice services will also help women. Mother can go out to do her own things, devote attention to other children in the family or just get some sleep while her child is in hands of a professional team.
I am confident that men will soon become stronger and carry on their life without having to carry the burden of abandoning their sick children.
For me my father is the best role model of living a worthy life with a disabled child and then without him.
I am happy that our campaign and hard work has reduced the stigma related to PWD. Why were not we able to see children with disabilities during the Soviet times? Were not there any children with the Down syndrome or cerebral palsy? This was because family members were stigmatized. They used to hide these children and did not show them to anyone. However, families have become more open and the public more accepting. As disabled children are not hidden anymore and we see them in everyday life, we think that the number of PWDs has increased now.
Integration into society is rather important for kids, which is both responsibility and concern of their family members. However I am far from sharing the idea that the educational process should be completely inclusive. Often children with disabilities become more stigmatized in an ordinary school than in a special school. Of course, I do not mean light form of disabilities. Based on my own experience, I can say that a child with profound disabilities acquires more skills in a special school compared to a public school, which is inclusive on the surface but does not have sufficient special education teachers and specialized programs. Nikusha, my brother, who had cerebral palsy due to a birth trauma, used to go to a special school. I never thought of sending him to a public school, even though he was an extremely communicative and affectionate child. He would not have been able to learn all the skills he acquired in a special school – writing, reading, poems, and songs – in a public school, because he had special education teachers and a special program with special approaches. Until our education system changes radically, inclusive education may harm rather than benefit some children.
Employment of PWDs trained according to their skills, is one of the indicators of country’s development. Nikusha’s favorite teacher helped him find a job. I even did not know that he was going to start working. He had told his school teacher that he wanted to find a job. The school teacher applied to M-Group, a restaurant chain. This happened in 2003-2004. In those days, people were not as aware of PWD-related issues as they are now. M- Group evaluated Nikusha’s skills. He could do things well with his hands, he only had a light mobility impairment. He was trained to be an assistant to the chief cook of a restaurant. He worked in the restaurant network for three years and helped the cook to process vegetables. Nikusha got salary for that, which made him rather happy because he could spend money as he wished. This helped him raise his self-esteem. I will be always grateful to Achiko Gegenava, who may even does not know that thanks to his help and the help of Nikusha’s wonderful teacher, for the first time in Georgia a child with disability got a skills-based training and was employed.
After 3 years Nikusha confessed that he could do more than work as an assistant cook and moved to other place.
I think that the family is the most important unit in the development of a child with disabilities. The family is responsible for raising a free and self-confident child, while the involvement of psychologists and occupational therapists is necessary for the evaluation of his/her needs and identification of his abilities to study and work.
I do not agree with the phrase that there are no disabilities but I believe that there are no limits of people’s abilities.
Even though I have been always concerned about Nikusha’s future and his condition, I have never paid any attention to others’ comments or unethical views. I have not gotten emotional or angry and Nikusha has also got used to paying no attention to anything. Once the vegetable seller asked him why he did not wear a hat in such a windy day and then added herself that he did not need it because he did not have any brains so it would not fly anywhere. When he told me that we both laughed because that was really funny. Naturally we did not get angry about this.
This strange view about Nikusha, developed in me the skill to deflect some of the things. I have an excellent skill of “not hearing” what I do not want to hear and therefore not to take it personally. For example, I did not get upset, when every swimming-pool refused to accept Nikusha and said that they got depressed when they saw such a child. So I found the pool in Public School #53, which gladly accepted him.
I used to say to Nikusha all the time that he was wonderful and he believed that. He did not think he had any developmental delays because of the environment in which he grew up. He could not walk when her mother let him go alone to the yard and told him, “If you fall down ask children and they will help you stand up“. Therefore everybody loved him and he belonged to all of them. I have often heard that children with disabilities are only care takers and they cannot bring any benefit to society. What kind of benefit do we bring to our society?! Have we thought about this?! Have we ever thought that such children help us develop skills, which we often lack, for example, how to be tolerant and help each other?! Kindness does not have any weight so it is impossible to measure who has done a bigger kindness. But I believe in one thing, these children do the greatest kindness – they help us become better persons.”