‘’I graduated from the Economics faculty, but during the studying process, I discovered that actually, I was interested in a completely different field. My father was an amateur photographer. I remember he had a ‘’Zenit’’ brand camera. He took photos and developed them himself in a small darkened room where my siblings and I were not allowed, but I really wanted to see the process. It was then that I got interested in photography – I too wanted to take pictures. However, when I became a photographer, I chose a digital camera – I don’t have to count how many shots I have left.

I learned photography on my own. I was basically looking for learning resources on the internet. My photograph friends also helped me and shared their experiences. Later I made a blog on WordPress; now that I think, it was mainly for fun, but working on this blog gave me an important thing – I was creating both content and visuals for the posts; it helped me improve. My goal was to learn social media on a professional level.

During this time, I began working as a social media coordinator for the Civic Education and Teacher Training Program. I had to work with pupils and teachers from Imereti, Racha-Lechkhumi, and Kvemo Svaneti villages. There was a lot of work to do and the salary was minimal, but I enjoyed my job.

The main value of this job was that I had the opportunity to share my knowledge with the people who needed it the most and for those with less access to it. I traveled to highland villages – I conducted training for pupils, teachers, and directors of schools in social media management and video advocacy. I was happy to see how quickly and successfully people started using this knowledge in practice.

In the teaching process, I grew professionally. Along with photography, I learned videography and editing. Now I make video stories myself.

I mastered information technology at a professional level during a free UN Women course.

This opportunity strengthened my self-confidence. I often say that during this time I proved to myself many things – in addition to being on the panel, I also helped trainers professionally.

After completing the UN women training course, I decided to start my own business and started to offer consulting services.

There are 3- and 6-month packages that include setting up social platforms, preparing audio-visual materials, and training for the staff. For the last 3 years, I’ve been working on different segments in Kutaisi, Batumi, and Tbilisi. Tourism, medical facilities, developer companies, real state agencies – this a shortlist of areas where I successfully used my professional knowledge in technology. I invested part of the income in my education again – everything is changing fast and the competition is huge, so, it’s very important to keep up with the newest trends. At this point, I’m making animations as well as teaching video editing and excel.

The pandemic affected my job; it hindered me. It became difficult to find new companies and to start collaborating with them. I decided to use my free time to spread my knowledge. I help everyone who needs help with social media. For example, I helped one teacher who lives in Zestaponi – I set up a WordPress blog and through that, she gained extra points. It’s very nice to be the cause of people’s happiness.

It was really difficult to have been through this path, and I’d love to make it easier for women and girls, and I’ll do my best not to let them go through the same.’’

‘’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.’

“I was born and raised in Ozurgeti. I was interested in social media and programming, but I thought that business, accounting, and auditing were jobs more suited to me. I even learned auditing, but didn’t ultimately choose that field – I realized that I was interested in something else and I was looking for something new. I made various accessories – wallets, bracelets, decorative handmade Christmas trees and I sold them at markets and exhibitions. I can probably make anything that can be handmade myself.

I was 25 years old when I participated in a training by ‘’Innovative Education Center’’ – social media marketing and web programming. A month and a half before the project started, my child, who was then two and a half years old, told me – “I want the world to know you” – he had such ambitions. I explained that I wasn’t sure about the world, but I promised Georgia would know me. In addition, I was interested in this field because I wanted to open an online store for my accessories. I needed Facebook and Instagram pages for this, but I didn’t know how to manage them. Everyone can make a page, but having a page is not enough, if you don’t manage it in the right way, don’t choose the right segment and so on, there is no point to have it. When I was told about the project, I thought, I’ll try to use it later for my pages – I didn’t think I would achieve such success. When I went through certain stages of the training, I realized that I could do more in the social space than I imagined and started working for it more enthusiastically – for me, it was important to learn it deeply and to be totally concentrated. Before that, I was always told that I should be a role model for others, and I thought to myself – after that I’d be an even better role model for people. When I say that, I mean for teenage girls. We had so many great trainers, and we got comprehensive answers to all the questions. Some girls also worked as a group, we had active communication with each other and with this, I learned how to work in a group. Everybody supported us, at any time, we could call any supervisors or mentors and ask them what to do and how.

When the training was finished, 40 girls were selected for the internship. We had the opportunity to introduce our work; I was one of them. After the presentation, I found out that I got into Grapevine Marketing Agency – this is a marketing company where I could maximize my abilities. Since this company didn’t utilize WordPress yet, I started learning to code. As for social media, they let me manage several Facebook accounts and I was actually pretty good at it. Also, I used to sit down with designers and learn what they were doing. Then, I was told that if I learned web design, they would help me in development. I learned web design, already using my own funds, and I’m very happy that they gave me a chance to develop myself. I was on an internship for a month, and then I stayed at this company as a graphic designer.

This project also changed my life financially. Now I also take private orders. In the future, I want to know everything related to technology. I’d like to offer a complete package to the customer. If I can do this, and I know I can, I’ll be very happy because my son’s dream will come true. I realized that just as others can help me, I can do the same and teach others. I have a plan to conduct trainings for women. I also want to do activities for women in the regions. My friends and I are thinking to record lectures for women on social media and to share experiences. Soon we’ll have Youtube channel as well.

I always had support from my family. My parents have always been proactive when I was learning something. When I decided to participate in the training, my sister quit her job to take care of my son. Later, my mother replaced my sister. My dad uses to say, how can you be learning something all the time? Take a break, have some rest. When I called him and said that I had some success and I’d be more successful in the future, he was very happy. They believe in me, they know that whatever I’m doing I’m doing it at my best level.

I want those stereotypes about women to be broken. It’s very important to me that I’m in this field today and I’m doing exactly this job. Especially it’s important in the regions, where women rarely get such opportunities. I advise all girls to aim for what they want and they’ll be able to do everything. The goals lead us to success and success is important for everyone.

‘’I was born with cerebral palsy in the village Kheledi, in Lentekhi district and I finished 9th grade there. My parents fought with all they had to enable me to walk at the age of 5, they put me on my feet and I was able to walk independently for many years. When I was 30, I had leg inflammation, and I developed a fear of walking, and since then I haven’t been able to move independently.

I was 15 years old when my mother passed away, and at the age of 17, my father did too, which made me more depressed and weaker. If they were alive, my life path would be different. After the death of my parents, I didn’t undergo any treatment and didn’t go through rehabilitation. From sitting and immobility, my tendons stretched and I became more dependent on my family members. I could no longer go outside independently. Both of my hips are fallen out of the socket; I first need rehabilitation and only then can think about surgery. This, of course, costs money and I don’t have funds for that; nor is the state financing it.

I was never distanced from the outside world. Quite the opposite, my family members always tried to get me out in the community, but I was ashamed of myself so much that I didn’t even use a wheelchair. I then considered it a shame. I didn’t sleep at night, and in the morning I woke up without energy and didn’t know what to do during the day. I wasted so much time in such a condition – I lost 39 years of my life in vain.

Through social media, I made many friends with disabilities, who convinced me that I should be out in the community and that there was nothing shameful about that. With their and my friends’ effort, I believed that I had to fight for my own better life and test my abilities. My parents’ dream and my main priority too was education. I have loved studying since childhood, but I had only finished 9 grades. Back then, there were no computers, it was hard for me to write by hand, and the school didn’t give me extra time to continue my studies – they found a solution (that only 9 grades are required by law) and didn’t let me to the 10th grade. I was 39 years old when I decided to overcome all the difficulties, leave the home, and study. I was given an extra boost to fight when, despite many promises, a job could never be found for me in Lentekhi. Although, I wasn’t using a wheelchair at that time and could walk. The official reason given for the refusal was that the buildings weren’t adapted. In fact, the reason was something else – I wasn’t considered fully capable because of my disability and also, the lack of higher education.

It gave me a lot of strength to realize that society perceived me as inferior because of my education. I searched on the internet and found a college ‘’Spectrum’’. I contacted the director of the college – Mate Takidze, struggled to get there, and finally, I was accepted on the faculty of Secretary-Reviewer. I was accepted there as they would any other, and although they didn’t then have the opportunity for students to live there, I was given a room to live in, with its own adapted toilet (the entire building is fully adapted for people with disabilities), and a bathroom. They saw my desire and how I desperately needed all this for my future participation in society. Therefore, I have to say that the director of the college Mate Takidze and his colleagues played a huge role in my success to be a part of society. I had the best classmates, they cared a lot about me and I love all of them. I was so eager that I attended all meetings and events.

My arrival in Tbilisi was also possible thanks to one journalist – Tamar Mshvenieradze, who was introduced to me by a friend. In fact, Tamar was the one who brought me to Tbilisi. She offered me to make a short documentary about my life, she came to Lentekhi and that’s how I got to know her. The movie ‘’Her Own Life’’ turned out to be really great and won several prizes.

I was graduating from college when information from the Ministry of Education came about a new program that was going to employ people with disabilities. With the recommendation of the college, I got an interview at the ministry. Despite a huge competition, I was hired as an operator at the Permit Bureau of the Ministry of Education, Science, Culture, and Sports. For me, it was like a second birth. I felt at work a complete person – starting from the Minister, all the colleagues accepted me, respected, and appreciated me. In this position, we are two disabled persons working and so far, I’m working part-time, but I’m not going to give up and I’ll try to work full-time as well.

For 39 years, my name was ‘’Nunu’’ and I became Nuka, because I left everything bad in my past, with my old name. With the new name, for the fourth year already, I started a new life that is completely different – delightful and very happy. Once I started working, I also rented an apartment and now I live completely independently. At first, I didn’t have a wheelchair and I was using a wheelchair of my friend – Giorgi Alavidze. ‘’Form 50’’, with which I could get a wheelchair, wasn’t given to me by the Ministry of Health. Because I could stand on my own feet, even if requiring someone else’s help and could wear heeled shoes, was considered enough for me to not need anything else. Nobody asked why I was wearing high heels though. In fact, because of my thighs problem, it’s difficult for my ankle to stand properly and I’m more comfortable when standing on heels. Again, with the help of my friends, I received information that with the support of foreigners, the Ministry of Health was going to purchase 3 wheelchairs and I struggled to get one of these three. We have to work hard for everything, even for the usual taxi ride. Some taxis refuse to take me and place the wheelchair in the taxi, which happens quite often and it creates an additional resistance for us to be mobile. Some drivers cancel an order when they find out that a passenger is a disabled person. I have to explain to the operators what a person with a disability actually means, they even asked for a confirmation document. It’s important that taxi companies solve this serious issue and offer service to everyone who requested with dignity.

As a rule, with the pension, I have to receive social welfare, but they canceled it years ago. I have brothers and the state considered them as my breadwinners. Now I want to try one more time and ask the state to finance my rent bill, which doesn’t provide social help for me, to a disabled person of the first category. I have already registered in Tbilisi and I was told, that one year late, I could apply to the municipal board to finance the rent. I hope that I at least get that from the state because I don’t have a large income to cover all the expenses by myself.

Since I received an education, started my job, and have other successes, I feel respect and appreciation from the people in Lentekhi from where I left earlier. Three years later, I arrived for the first time in Lentekhi and the only adapted place was the new parks. Imagine, even the municipality building isn’t adapted and it turns out that this place is completely inaccessible for people with disabilities. There is such a ramp in the new hospital that if someone doesn’t meet you downstairs and catch you, you will break something. Without the help of someone, climbing the ramp is unbelievable and you can’t really call it an adaptation. There are still no services for people with disabilities and I want to do my best so that no one has to break the same wall that I had to.

I fell many times in this battle and I don’t want the same to happen to others, I don’t want them to leave Lentekhi like I had to integrate into society. This summer, while being there, I wanted to meet an MP and local councilors to talk about the needs of people with disabilities. I tried to communicate with one of them and he didn’t even make think I was worth an answer. I’d like to say from here as well that I’m ready to get involved in creating adapted places for people with disabilities in Lentekhi or in creating any other services for them.

Due to the pandemic, I haven’t been at work since March 13, I’m mostly at home and it has been very difficult for me. I haven’t been able to buy a computer yet, and this interferes with many things. For example, I work with various NGOs, and working from home without a computer is impossible. Also, in my free time, I like to write poems and sketches and I can’t do it on the phone either. I still have to pay debts and I can’t even buy a laptop with installments.

In general, for all people, and especially for a person with disabilities, support from other people is very important, and that’s what also saved me. I want to argue to all people with disabilities who live a closed life – to draw the curtains and make society see who they are. We should never be ashamed of ourselves because we are human beings like any other. Fight for your better life and don’t become a slave to anyone, not even to your family members.

Matsatso:

‘’I’m diagnosed with Wolfram syndrome, with multiple disabilities – blindness, hearing impairment, and both types of diabetes. All of these symptoms are manifestations of Wolfram syndrome.

I was two and a half years old when the first symptoms appeared. I was diagnosed with diabetes, but since it’s a common disease, there wasn’t even a question if we were dealing with something else. Of course, they conducted some additional tests, including for non-sugar diabetes, since sugar and non-sugar diabetes have similar symptoms, but I wasn’t diagnosed with that. Therefore, this disease wasn’t a suspect, because this disease causes both types of diabetes simultaneously. I was six years old when my eyesight deteriorated – it affected my handwriting, and I couldn’t see what was written on the board. However, the doctors couldn’t find out what was causing problems with my vision. When I became 10 years old, a nerve atrophy examination machine was introduced to Georgia, I used this opportunity and I was diagnosed with optic nerve atrophy. Later, hearing loss also appeared, and around the time when I was a teenager, I already had hearing loss of first degree.

My sister too has Wolfram syndrome and in her case, all the symptoms manifested gradually – she already had none-sugar diabetes. Based on the advice of ‘’Association of Diabetic Children’’, I also took the same drugs as her, for non-sugar diabetes, and the symptoms receded. We realized that the same thing was happening to me, even though the endocrinologists couldn’t confirm that. When I was diagnosed, there wasn’t additional stress or emotions – I just got used to the state I was in. At school, I studied as usual, like everyone else. The only thing was that I needed to follow a special diet, I couldn’t eat everything, I had to consider the time and take insulin, but I didn’t miss anything because of it, be it a class trip, an event or so on. I was fully involved in everything. My sight was slowly getting worse, I already knew other people who had this syndrome and I could realize to what state the vision would be going – atrophy. In such cases, surgical interventions aren’t possible. I was visually impaired until I was 23, but from 24, I couldn’t move outside independently, now I can only perceive light. I use a white cane, which is for blind people and I use hearing devices in both ears.

When working with the computer became too difficult, I contacted my friend, who is blind, and asked, even though I didn’t go to the school for the blind people if I still could learn using the text-to-speech program. He told me that there would be no problem at all, helped me to get into the project that was teaching the audio program in the Union of the Blind and first I learned the initial steps, then I also met other blind people, who helped me a lot to learn it in detail. I was looking at all the vacancies to get a job. I remember, how my family members were angry about it, they said that not even healthy people could get a job and why would I be so hard on myself. It wasn’t discrimination, it was advised not to put myself through unnecessary emotions. In 2011, I also saw information on the internet and it was also announced in the Union of the Blind – The Revenue Services had announced vacancies for people with disabilities. I filled out the form on the last day, passed the interview two or three times, and in 2012, they hired 20 people with disabilities, including seven blind people. From the 1st of April, 2012, the electronic consignment note came into force, before that it was written on paper. They gave me the materials I needed to learn, my parents helped me at home, I didn’t go through any training. The staff also helped me a lot, I listened to how they responded to customers. Back then they weren’t familiar with it and I was helping them fill out the consignment note. Nowadays, support calls on this issue are very rare, also there is a hotline, which wasn’t there before. I talked to my supervisor and asked to give me some more tasks to do. Now I help my co-worker and I make the register of orders. It was necessary for me to feel useful.

Awareness of information about people with disabilities should be high, even though people have been talking about it for so many years, we haven’t overcome the stereotypical attitudes so far. To me, those attitudes are less pronounced, probably because there is nothing obvious physically, and also, I use a hired taxi, which takes me to work. Every time I use public transport, I felt terrible discomfort. My mother always asks me that we use a taxi and I’m always angry about it, why should we spend money in vain.

Especially, I’m getting comments from older people – ‘’Aww, poor girl’’, there is also positive discrimination – ‘’you are so great, so beautiful’’, etc. I don’t pay attention to it and think to myself, that I wish you were as tough as I am. It doesn’t bother me but affects my mother very much. As for shops, cafes, etc. they have an absolutely neutral attitude – if I need help, they help. Several times, when I went to a clothing shop, I asked for a consultant immediately, explained my condition, told her what kind of shoes I was looking for, and asked her to help me. We don’t have consultants who know how to behave in such a case, but I don’t hesitate to tell them. My mother says that they are not obligated to know, but I still try to teach.

So far, Georgia doesn’t meet the requirements of the UN Convention, which is important to everyone, not just for the people with disabilities, for the elderly and parents with small children. We don’t have Inclusive designs for zebra crossing for people with disabilities, neither do we have lights with sound. Inclusive design means an affordable and safe environment for all people. I understand, that we are a developing country, there are still many problems and it requires a lot of money, but… so far little has been done regarding this. On July 14th, 2020, according to the UN Convention, Georgia adopted a new law for people with disabilities; this law doesn’t cover everything, but this is also good that at least attention was paid to this. We, organizations of people with disabilities have made requests to make changes in these records, let’s see what happens.

In 2017, I founded an organization. Wolfram syndrome doesn’t have a rare disease status in Georgia. There are a total of 30,000 patients with this syndrome in the world, in Georgia, according to my research, there are 19 people. This disease is manifested in one case out of 500,000 and 19 cases is quite a big number for Georgia. There are three families, where two siblings have the same syndrome, I got to know these people one by one, I know their needs, I know everything about them. I’ve been taking care of this issue for three years now, I’ve been in the parliament, in healthcare, I have advocated that we need free medical care. We received two canes that were neither white nor had the acoustics it should have had. These canes should also have a red circle, which means that the person also has a hearing impairment. 13 out of 19 people are both deaf and blind, and two or three of us have hearing devices. When I started using them, I had a second degree of hearing impairment and I wasn’t eligible to get it free, but even if I was, it was of very low quality. Abroad, where they have great social packages, the devices aren’t funded, but they manage to buy them with their social package and they’re only paying 30% themselves. We have a very bad situation regarding that, when I needed, I paid 800 GEL for one device and 1400 for another. People with Wolfram syndrome usually don’t go outside. They are mostly locked at home because they don’t have translators or personal assistants. We have other needs as well – Because of the fact that these people often feel ill, parents cannot leave them alone. For example, when my father died, my mother had been sitting at home since 2015, because until then my father took care of everything. In our case, food is not an issue, I work too, but some depend solely on their pension, which is quite a small amount. In addition, most of them live in socially vulnerable families. Therefore, it’s necessary to increase the pension.

In the future, I’ll continue to fight for my goal – the state should grant the Wolfram syndrome rare disease status and establish free medical care.’’

‘’In 1943, when I was born, the Germans had already been deported from Bolnisi, but there were still some German women who were married to men of different nationalities – Armenians, Greeks, Azerbaijanis, or others – all of them were married in Bolnisi.

When Mariam was born…

“When Mariam was born, the doctors didn’t bring her to me for several days. They tried to get me used to the fact that the baby wasn’t healthy, she wouldn’t survive and they assured me it would be the best solution for me to leave her there. 4 days later, at my urgent request, I met her for the first time – she was an amazingly beautiful baby, but so weak that she couldn’t eat independently. It took a lot of struggle to take my baby out of the hospital. None of the doctors agreed with me. Down syndrome was the suspected diagnosis, by which we, mother and the child, moved to Iashvili Hospital and stayed there for a month. My life there was horrible – I had to strong-arm doctors every day to keep the baby with me. Due to stress, my milk dried up and I took Mariam from ward to ward to other mothers, who would breastfeed her. During this one month, I thought a lot about what my life would be like with Down syndrome in it, I gathered my strength, planned everything in my head – I even saw what Mariam’s life would be like when I’ll be 60 and I strongly decided, that despite these objections, my child would stay with me.

At that time, there was a lack of information about Down syndrome. Imagine, even pediatricians couldn’t provide me with any information about child care. On the opposite, they mischaracterized the abilities of people with Down syndrome and I too convinced myself, that according to them, Mariami could never know me – she wouldn’t be able to call me mother or be able to walk. I was educating myself – I read a lot of literature and articles about the syndrome and realized it was nothing like how the doctors described it. I knew life with Mariam would be difficult, and would need a lot of therapeutic work, but it would be productive and beautiful. Mariam is now 17 years old.

“When I was 23 years old, I got married, loved my husband and my child was six months when I divorced him – we fought constantly. Since then, he has never helped me with anything, nor is he paying the alimony, and now that Niniko is 10 years old, he has seen her probably seven times. I moved back to my parents, who stood by my side and from then, I’m raising the child alone. I soon found my first job; I finished first the faculty of the history of diplomacy, and then the public administrations. I worked at government administrations, but my department was closed and I had to leave.

In 2016, I decided to start my own business. My friend has his own brand of clothes and suggested to me to buy a printing machine – he would print first orders with me and later I could take orders from other companies as well. He gave me his office too. It was a very kind gesture from him. I started with one small machine and I managed to now have my own sewing company with all kinds of services to take all kinds of orders. The company employs seven women in a full-time job. The pandemic affected us, like almost every company – we even had to stop for a while, which was a big loss, but from August we’ve been able to recover fully. Our customers still seem unable to place orders as they did before, but slowly they are getting back on their feet.

“I always say that Telavi has ‘’grown old’’. Like other regions, ‘’young minds’’ leave as soon as they finish their bachelor’s degree, and go to big cities.

If we don’t make the changes as we see fit, others will adjust things to themselves and that won’t bring us anything good.