Author of the article: Mikheil Gvadzabia
Lia Tabatadze is the founder of “Georgian Down Syndrome Association” and social enterprise “Babale“. She began the fight against stigma 14 years ago when Theo was born: her second child with Down syndrome.
Lia and other parents try to fill the vacuum created by the lack or inefficiency of state services as much as possible: “Babale” helps teenagers with special needs to improve professional skills and get employment, and the association helps and supports people with Down syndrome and their families in various ways.
Lia Tabatadze tells Aprili Media how a small group of parents, despite many difficulties, was able to bring the enthusiastically started project to this day and successfully fight for changes, including in state policy.
She also tells us how the Russian law adopted by the current government threatens the process built over the years, which is largely based on cooperation with foreign foundations and non-governmental organizations.
“Everyone Was Whispering About It”
I am Lia Tabatadze, the founder and director of the Down Syndrome Association of Georgia and the social enterprise “Babale”. But before I had these positions and these organizations appeared, I was and am an ordinary parent, a mother of two children. The second child, who has Down syndrome, has already become a 14-year-old girl.
I am an art critic by profession. I still love my profession very much, but I gave up all my professional and career paths and moved completely into this field gradually after the birth of my second child, when I realized how much stigma there was and how many problems people were facing around me. Everyone whispered about this issue, even saying the word “Down syndrome” was embarrassing and associated with shame. I decided to change this: first of all, in my family, neighborhood, relatives, and then in our country as a whole.
I am the conduit of the interests of my son and all my children in this country. These are very Georgian and very national interests and in no way foreign.
Vakho Kareli / Aprili Media
Along the way, I found like-minded and thoughtful parents, and we, as a team of parents, managed to make many changes in this country: first, to show our children to the public and show them that it is not a tragedy – in fact, we are all born different and it is more common than drawing a line on someone’s difference.
We gathered about nine parents at different times. At first I was alone, then two, three, and so we started together. First there was the multicolored socks campaign: an initiative by Down Syndrome International, which chose the sock as the shape of a chromosome. Overall, this campaign helped us a lot to color the society and show how diverse our lives are; That we should all contribute or at least not interfere with creating an environment where we can live together and support each other.
It was precisely this environment that gave birth to “Babale” and “Down Syndrome Association”. We do everything we can to plan the life and development of our children right from the time they are in the womb and reach out to everyone, whether it is a child born in Tbilisi or a mountain village.
Movement of Parents (Mothers)
When I mention parents, unfortunately, behind “parents” we are mostly mothers. This is actually a movement of mothers. At first, we started talking openly with the public, sometimes one parent, sometimes another… we were unacceptable to some parents, why were we talking about it out loud. Then it became a common story.
“Babale” started in 2015. This happened after one of the international campaigns in which we were involved and whose message was “I want to work”. This is the period when children were mostly left in maternity hospitals because of their diagnosis, and parents were given directly negative advice by the medical staff: they were advised to leave directly. Then we also worked on it so that similar things do not happen in maternity hospitals and such facts almost do not happen anymore.
Therefore, we also thought that we would appear very inadequate: what is the time to talk about work, when children were left in the maternity hospital… But we did not wait for “Iveria to shine” and started to take these steps on our own.
My daughter was 3-4 years old then, and her work was a very distant prospect. But it also affected me that today I am teaching her to be independent, in time to learn to eat, self-care, walk, read and write on her own… Why am I doing this? So that tomorrow and the day after tomorrow she learns to live without me. And living without me means she has to have her own income to live independently.
In the process of thinking about this, we learned about social entrepreneurship, which was perfect for us. This is the concept when the business model works for a social purpose: you do business to use this money for your social purpose, and our social purpose is the professional development of our children, first of all, and employment support.
Unfortunately, neither the state nor donor organizations financed it. Many donor organizations were not specifically interested in this topic. There were employment issues in general, but people with Down syndrome need a different kind of support, and it took us a long time to show that to others.
Today, we can already say that based on our practice, we have made a very good program, with four levels, where we accept children from the age of 12 and they grow up in our hands, so to speak. First, it is a creative process, then we work on professionalization and, in addition to “Babale”, we also introduce different professions, we help in obtaining professional knowledge and employment.
When a crying mother, a citizen of Georgia, calls me from the maternity hospital, and that she will receive a hotline, psycho-emotional support, translated literature, that they will provide proper health care for her child, which was helped by foreign funds… How is this pursuing the interests of foreign powers? It’s incredible.
At the same time, the association works. Since there is still no parent support mechanism and no program in the country, they find us again and we provide them with this psycho-emotional and informational support. After that, the association creates different types of programs for young people.
I myself am surprised, how we parents went through this path together. It’s not from scratch, it’s a work starting from minuses, but we had a lot of motivation, and to this day this motivation gives us the opportunity to do more and more.
Success of “Babale”
Vakho Kareli / Aprili Media
“Babale” has had many challenges, the most difficult periods. I have often thought that it would be better to give up all of this, but my head has passed me by, the nights have passed, I have done the impossible. We survived only because I always knew: it had to go on. And that’s how we came to this point, which is really a miracle – we started a business with 10,000 GEL and reached a turnover of half a million. We achieved incredible results with non-existent capital.
From the very beginning, I knew that Babale had to create a product that would be very interesting to consumers and would be purchased not only because there is some social theme behind it, but because they really liked that particular item.
We have achieved this to some extent, but we have come a long way. I am not a marketer by profession, nor have I attended any courses. I just believe that when you really want something, you are sincere in your goals and you know exactly what your work is for, you are in the right place at the right time and with the right people. That’s what “Babale” managed to do and gradually acquired friends: friendly companies, various donor organizations, which at different times sometimes bought us a machine, sometimes a sewing machine, and so we built all this step by step.
“Babale” products are based on the process of co-creation. One person does not create all this and everyone contributes. For example, last year we made Christmas tree toys based on a dragon drawn by Theo, which were among the best-selling products. So, often our children’s works become inspiration for products.
In addition to being a place of employment, “Babale” has also become a kind of educational place, both for our youth and other interested persons. When they come to our space, many people don’t know anything about Down syndrome, and they learn a lot by working with us.
What Awaits for the Achieved Progress?
When we started Babale, the state did nothing in terms of employment. Vocational inclusive education started only in 2015, which was preceded by our “I want to work” campaign.
Later, there was a support-based employment program, which is implemented by an employment agency, but this program is hardly used by companies, because there are many more needs beyond wage subsidies, including pre-training. In general, it is difficult for everyone to make a professional choice today, and even more so, our girls and boys have a hard time in this process.
More proactive steps are needed and it seems that we were going here: we worked a lot on policy documents, ratified the UN Convention, adopted the Georgian Law on Persons with Disabilities… I have participated in almost all the processes that I have listed and made my contribution to change all of this in the big picture.
If it were not for international organizations, the US and the European Union, the challenges of people with disabilities would probably still be the same as we remember from our childhood, when we simply did not see disabled people around us.
And today, with one stroke of hand, with the adoption of one bill, all of this can be stopped – it has already been stopped – and if not stopped, it can also experience regression and sink into the water. The situation in the country broke many bridges. In the long term, we can no longer see what and how it will be. There was a risk that international and donor organizations would withdraw.
It seems that we have reached a certain stage and real changes should be reflected in the lives of specific people. The most difficult thing for us was to put into practice what was written on the paper. When we got to the performance, everything stopped.
If Not for the International Organizations…
Vakho Kareli / Aprili Media
The role of the state in the activities of “Babale” and the association is the smallest; So small that it does not change the picture in our work now and will not change in the future. “Babale” was started with the support of a Georgian non-governmental organization, which was financed by another foreign organization. Even in the association, when we were saying that parents need support, our children need specific health care and a protocol should be created for that, then our medical system knew nothing about the health management of Down syndrome. We brought this to this country precisely with the support of various donor organizations. They were the first to believe us. We still struggle with the state, we have to prove something.
If it were not for international organizations, the US and the European Union, the challenges of people with disabilities would probably still be the same as we remember from our childhood, when we simply did not see disabled people around us. If anything was created, everything was created with the support of donor organizations in this country and then gradually became state programs.
Enormous support has been provided not only programmatically, but also through policy documents, even from the UN. Our country would not be able to do anything without them. Inclusive education was fully funded by the Norwegian government at the time, spending a huge amount of money. Today, our children go to school and are involved in inclusive education, thanks to Norway.
If we are left without all this, it will be very difficult for us. The budget of one state, which will be filled with our taxes, cannot physically interfere with all this. We will lose what we have, if we do not develop and create something new.
“This Is a National Interest, Not a Foreign One”
Enforcement of this law [Russian law] will give us very bad results. I don’t know how much the population is informed, what type of declaration to fill and what type of information they are asking to submit. It turns out that you only have to fill out those documents and you can no longer concentrate on the case. In addition, they ask for the type of information that contains a lot of personal data. This will certainly hinder us and the donor organizations… Many organizations are thinking of leaving, many have stopped functioning.
The position of the citizens is often: who will harm you, no one is against you… This law applies to us in the same way. We will be harmed in the same way as anyone else and, first of all, the country will be harmed as a whole. If it continues like this, if we all follow it, step by step, probably all organizations will be closed, including ours. Physically, it will no longer be able to function, especially the association, because it has never had any support from the state and probably will not have it in the future.
We only do Georgian, national work with the help of international and foreign organizations. It will always be this way, and if it ends, it will end with us all being right.
The most moral thing that hits the civil sector and me personally is how I am an agent of foreign influence or force. This verbal agreement has a negative context in Georgia, no matter how we spin it, and the authorities of this law “help” us to perceive it negatively. They will sew a label on you, as if you are doing something wrong, taking someone’s interests.
I am the conduit of the interests of my daughter and all my children in this country. These are very Georgian and very national interests and in no way foreign. When a crying mother, a citizen of Georgia, calls me from the maternity hospital, and that she will receive a hotline, psycho-emotional support, translated literature, that they will provide proper health care for her child, which was helped by foreign funds… How is this pursuing the interests of foreign powers? It’s incredible.
We showed the donor organizations exactly what problems our families were facing and what was needed to solve them. That’s what they help you with when they finance you, not that “if you have an organization, I have my interest and now you do it”. We are not going to do that, and they are not going to order anything from anyone. On the contrary, I can say nothing more than thanks to all those organizations, if anyone has done something for Georgia.
This foreign power is mentioned as if some enemy is coming in, fighting this country and using us as a weapon. Actually, it is not so.
“We Will Not Register”
Vakho Kareli / Aprili Media
Regarding this law, I went through a lot of consultations, a thousand different opinions… We thought a lot or a little, our team made a decision that we do not register voluntarily, precisely because we are not a conduit for the interests of a foreign power and we cannot declare it with our own hands. Then they will register us by force, we will wait to see what will happen. We only do Georgian, national work with the help of international and foreign organizations. It will always be this way, and if it ends, it will end with us all being right.
Of course, there is nothing wrong with transparency, and all organizations should be transparent, including the state budget into which each of us pays taxes. There are about 20 laws in Georgia that regulate different types of income, management and accountability to the state. Among them is the Law on Grants. If the goal was really transparency, we could include it in the existing laws and not create something new, which would sew us new stigmas and labels.
Civil society, if someone is financed, no one does business secretly and opaquely. We have a fairly transparent relationship with the Revenue Service. And if an NGO is not transparent, neither the donor nor anyone else will trust it. It just won’t work. So, all of us, by our nature, are transparent in our relations with both the donor and the state.
The Future
What will the future look like? I was a bit pessimistic about this in the spring and summer, but now I’m more settled. When I went to the regions, I saw many people during the summer, I listened to many conversations of ordinary citizens, and I have a feeling that the society is ready for changes.
I believe that the citizens of Georgia will definitely bring these changes. This is for us to do, not for some mythical leader. I hope I will not be disappointed. We survived wars, we went through a thousand difficulties together as an independent country. I think that this is our path to walk together and we will definitely go through it successfully. There is no other way. This is how we should do it.