Finding out the state of health, searching for information, fighting for the child’s rights and resources, trainings, finding like-minded people, connecting with parents whose children have similar needs – the respondents of Aprili Media started this path, over the past 20 years, at different times and independently of each other. However, in the end, similar visions and direction led Natali, Irma and Ruso first to a common space, and then to an idea — to establish a club of mothers of disabled children in Batumi.

People with disabilities face many obstacles and problems, whether it is widespread stigma and stereotypes in society, lack of public services – often even non-existent. In our reality, mainly mothers, by their own efforts, try to protect the rights of their children and create an adapted environment. But who cares about mothers?

Natali, Irma and Ruso first met each other at trainings, then they gathered in informal spaces where they talked about children, motherhood, problems and solutions. However, they soon realized that these meetings should be more varied and large-scale, so they founded a mothers’ club. Over time, this club has become a space where mothers take care of each other’s psycho-social needs and, at the same time, fight for the rights of their children with united forces.

Natali, Irma and Rusudan tell Aprili Media about their individual experiences of motherhood, as well as the importance of the club, unity and future plans.

“Generally, Mothers Have to Fight with Everyday Life and Challenges”

Irakli Kurua / Aprili Media

“What is our situation now and imagine how much more of a challenge it would have been for the disabled community 21 years ago” – says Natali Davitadze, a parent from Batumi, who started the fight for her child’s rights and changes all by herself 21 years ago, when she heard about Mariam’s health condition.

Today, Mariam is the European champion, four-time vice-champion and multiple world prize-winner in arm wrestling. However, before this result there were many obstacles that she overcame with her mother, Natali and her associates.

Natali remembers how she went from street to street looking for parents whose children had the same condition as Mariam. Mariam is deaf and has hydrocephalus. In the beginning, together with Natalie, it was the parents of deaf children who gathered together to create a better environment for their children.

“With a very small group of parents, we were able to make a lot of changes. For example, an integrated group for our children was opened in one of the kindergartens. Before that, our children did not and could not go to kindergarten, because there was an unprepared environment there. Then the fight for cochlear implantation began, because the state did not finance it and it did not exist as a program. Fortunately, it is funded today… Then came the process of entering the school. Here, unfortunately, the school turned out to be unprepared for us, because they had special teachers, but no sign language interpreters. We still have this problem today. We had to move to a specialized school in a different city, which once again violated one of our children’s basic and fundamental rights to education, because they had to receive education far from the city and home,” says Natali.

In 2021, Natali started working at the independent living center in Batumi, where she learned about the needs of not only deaf children, but also other children and met other parents from the disabled community.

“It is necessary to find your like-minded people – people who are interested in the topic in which you are immersed… no one will understand you more than another parent of a disabled child, because we understand each other exactly as it is in reality, and it is precisely from this point of view that all parents come out.”

Natali, Irma and Ruso founded the Mothers’ Club in Batumi 2 years ago. The original idea was to form a parents’ club, but it is said that in the end the mothers’ club came out, because the involvement of fathers was practically non-existent and only one man attended the meetings – the head of the NGO “Changes for Equal Rights”. According to Natalie, in Georgia mainly mothers have to fight with the challenges of their children. It is to non-governmental organizations that Natali connects with opportunities for active communication with like-minded people, as well as for development and awareness raising.

“I will say from personal experience – if there were not such non-governmental organizations around me where I had to work and communicate with them, I would not have been able to do anything and I would have stayed where I was 21 years ago. My son and I would grow only physically. These organizations gave me the opportunity to be employed, develop and raise awareness; These organizations connected me with different people and, you know, how much strength unity is.”

She believes that the Russian law will set these processes back:  “If this continues, if grants from donor organizations are stopped, many disabled people will remain outside of many services and we will go back a few years”.

“Parents, Who Weren’t Confident in Themselves Are Now Advocating for Each Other”

Irakli Kurua / Aprili Media

Irma Kiladze is a medical-ecologist and pharmacist by education, however, after learning about her son’s condition, she was unable to work professionally for a long time.

“I have two sons. The eldest is 21 years old, Niko, and he has autism. It was Niko’s condition that led to an important change in my life,” says Irma.

Niko was diagnosed with autistic spectrum at the age of 6 – when he came to kindergarten, but he did not join the group and had difficulty communicating with his peers. Irma recalls that at that time both she and society were less informed, which caused a number of difficulties in Niko’s life. For example, neither the garden was ready nor the teachers had information. Irma  began to find out, also looking for parents whose children had a similar challenge. Its main goal was to create an acceptable and adapted environment for Niko.

“I contacted several parents in Batumi and Tbilisi. I was very interested in interviewing parents of adults because I’m sure all parents have the same question — what will happen ten years from now? Will he be able to live independently? Will he be able to create a family? etc. For this, it is necessary to get advice from an experienced person”.

In order to understand the challenges and needs of both Niko and the community in general, Irma constantly attended meetings and trainings, where she met more parents and understood the fact that parents of disabled people not only needed informational reinforcement, but also their psychological support was very important. The realization of the idea of ​​the Mothers’ Club, like Natali, in the case of Irma was preceded by work at the Center for Independent Living in Batumi – an organization that fights for the rights of people with disabilities, Irma was employed here in 2020. Mother’s club was also created on the basis of this center.

Irma recalls that before she started working, she only talked about the health status of her children with parents or community members, but today she advises everyone not to “get lost” in medical reports  and first of all to think about their psycho-social needs in order to have a healthy relationship with their children later on.

“Our meetings are very diverse. In addition to information meetings and trainings, we have recreational meetings, for example: yoga therapy, mouse therapy, field meetings. We also have a communication chat on the social network, where we exchange information with each other. If we are facing some challenge, we all share the experience with each other. Also, through the center, we had a visit to schools — the parents’ club is actively involved in the center’s activities. We were in 15 schools, parents shared with the school administration our views and recommendations regarding inclusive education, we also received information from them on the challenges that exist in the school. I can tell that parents who were not confident in their own abilities are now advocating for each other, giving advice and sharing information. We hope that our connection will not be lost and we will change many things for the better in the future.”

First there were three mothers, then 20, and today there are more than 100 parents, specialists and community members in the communication chat. Irma tells us that there are mothers of different ages in the club, who teach each other many things and strengthen each other. Mothers’ Club meetings and activities are currently held on a voluntary basis. The trainers or specialists who lead the meetings planned by the mothers are involved as volunteers. In order to introduce more parents and gain international experience, mothers are considering giving the club official status.

“In itself, we have to give the club an official face, it’s just that there is still some fear factor, risks, dangers, as well as lack of time – being a mother is not an easy task and, apart from the fact that we have work duties, responsibilities in the family. This is the main obstacle that hinders us, however we still have motivation and the main thing is not to stop”.

“What We Have Fought for and Created for So Many Years Might Disappear Altogether”

Irakli Kurua / Aprili Media

Rusudan Shervashidze has two children. 20-year-old Tatia has microcephaly.

“When Tati was born, it was a time when people with disabilities “didn’t exist”, or were not taken out, or were called “disabled”, which, unfortunately, remains today in a derogatory aspect. It was a difficult time, we didn’t know what to do. I will no longer look for the fact that there was no parental support at all. We were in complete chaos. Even though we have a lot of friends, a great community, and family members, I still needed a different type of support from people with similar challenges — like-minded people who could talk about the same thing.”

In 2018, Rusudan founded the non-governmental organization “Union of Parents of Disabled Children of Adjara”, however, working only on organizational issues was not enough for her, and that is why she decided to participate in the establishment of the mothers’ club together with Irma and Natali.

“The club is therapy, spiritual condition, mutual support, which is very important for a mother. The organization is doing something else.”

However, the future goal of mothers is to unite these two spaces – so they will be able to act for the well-being of their children with more strength and energy, as well as take care of the psycho-social and spiritual condition of their parents.

Over the years, all the meetings in the Mothers’ Club were held voluntarily, with the enthusiasm of both mothers and invited specialists, however, on the day of the interview with Aprili Media, they learned that they had obtained funding for one of the social projects. The project involves an inclusive photo session and exhibition, which will be held in Batumi and everyone can participate.

We talked to Rusudan about the projects and programs that were introduced with the funding of non-governmental organizations and international funds for the welfare of the disabled community. One of these is the personal assistant program that Rusudan’s daughter Tatia uses.

“Whatever direction the current government has taken, if it continues on this path, it will be very bad for our children, and not only for our children, but for the community of disabled people in general. The projects, the programs that my son benefits from today, were created by non-governmental organizations and handed over to the government, and have been implemented ever since. For example, my daughter now benefits from a personal assistant program, which is vital to promoting independent living — primarily because she learns how to get out on her own, doing things that are important to her. Also, I, her parent, if I could free up time to not be with her 24 hours a day and be able to work, provide for my family… What we have fought for, for so many years can all be thrown into the water.”

Rusudan advises parents of disabled people to accept their children’s condition  and as a result, they will be able to help them faster.

“The world is full of opportunities, why do we limit the opportunities for our children? The more we help, the more we show the right direction and path to ourselves and our children.”