I was born with bilateral hip dysplasia. It’s not a kind of problem that would make a person disabled if the right medical approach was taken, but thanks to our “traditional” cradle, this is exactly what happened to me. The joint has the ability to heal itself and if instead of a cradle, I was put to a normal bed and the joint wouldn’t be tightly restrained, I would be a completely healthy person. However, I’ve always been a very active person and had the opportunity to make decisions independently, thanks to my mother. Perhaps it helped – I felt like a full-fudged person in the community without any complexes.

In general, if we talk about the attitude towards people with disabilities, from 2003 till today, not much has changed. We founded the first non-governmental organization – ‘’House for Harmonious Development of Children’’ in 2003 together with like-minded people. We opened an inclusive studio and held a big concert at one of the cultural centers, where children with typical development and with disabilities participated together. The concert was a success, we, the organizers were very proud, but when I looked around, everyone in the hall was crying. Then and even now, pity towards people with disabilities overpowers everything else – admiration, pride, appreciation, respect, and so on.

Finally, my place in human rights activities was determined in the war of August 2008. Three friends formed an initiative group in a force majeure situation and helped IDPs from the conflict region, especially women and girls with disabilities. In 2012, I founded ‘’Woman and Reality’’ to make a bigger contribution to protecting the rights of women and girls with disabilities in Georgia.

Despite many steps forward, a lot of work still has to be done. A lot of work is needed to change attitudes and to make the attitudes positive. For example, people often don’t know how to help a person with disabilities, and sometimes, with additional care, they even make them feel awkward. I understand that you may never have to live with a person with disabilities and don’t know their needs in detail, but if that’s the case, it’s better to wait and if necessary, the person will ask for help themselves.

Often even the media coverage of disabled persons only serves to instill pity – the reporters only let disabled respondents talk about rights, adapted environments, and conventions. Are all disabled people supposed to be activists? Shouldn’t they let them talk about anything else than challenges in this field? The only exception when they talk about achievement is Paralympics. In reality, we are “women with limited abilities”, not “ability-limited women”, as we are often called. Womanhood is our identity, and limited abilities are only an additional feature. We, as a society, are very far from accepting disabled people, so it’s necessary to display us from another angle so that we’re more than just targets of pity.

One of the causes of lacking adaptations for specific needs is the lack of solidarity and support from people with typical development. Take female women’s rights activists with typical development – when doing their jobs, do they always think of disabled women and their needs? For example, in Georgia, female activists work really great against domestic violence and they have really good results, but do they know, how many disabled people live with an abuser and how many of them had needed physical separation? Or, do we have fully adapted shelters for abuse victims?! This is related to the problem of conscious acceptance. I think we need solidarity that goes both ways and women with disabilities should also support other groups. This tribe is not a small force – according to official statistics, there are 44,000 disabled women above 18. From them, only 4-5 people fight for their rights and such fragmented requests can’t change reality. Thus, the tribe of disabled women should strengthen so much to become a force to be reckoned with. Women with disabilities aren’t able to present their problems as part of the agenda.

Despite the UN disabled people’s rights convention being in place in Georgia since 2014, local or international responsibilities that regulate women’s rights aren’t reconciled with the above-mentioned convention even today. Even political documents or action plans that directly regulate women’s rights don’t consider disabled women and girls. So, the systematic problems, that were there before the convention, remain the same.

Disabled women aren’t part of decision-making on any level. I’m not even talking about central or local government – we don’t’ even have voting power in commissions or councils working on disabled people’s rights. Women aren’t even involved in managing organizations for disabled people, except when a woman is a founder, because even in the tribe there’s gender-based sensitivity. If we want to see disabled women in positions of power, even in local self-government, we must start working on it today. This problem is intertwined with access to education. I requested statistics from the Ministry of Education – I wanted to know, how many disabled women above 18 received education. Do you want to know what the number was? 18 disabled women, including higher and professional (college) education. The social welfare package in this country is completely bogus, and, in my opinion, the program protecting the socially vulnerable shouldn’t be bound to disabled status. Let’s take employment as an example – if a visibly disabled person is employed in the public sector, they receive both their salary and their compensation. But welfare for significantly disabled people was canceled in 2013 when only 103 disabled people were working in the public sector. This standard is completely bogus and even the public defender has determined there were a few cases involving discrimination. The state, instead of encouraging the employment of disabled people, kills all motivation and hopes for social integration in young people. Often, disabled people have to say no to temporary employment in fear that the state will cancel their welfare check.

We went through a very hard process to include access to sexual and reproductive health in the 2014-2016 governmental human rights action plan. It turned out that they didn’t even consider that disabled women would need those services. I remember clearly that when, on one of the working meetings, I voiced my opinion on this issue, nobody supported or even opposed me – they were completely oblivious to what I was talking about and how were reproductive and sexual issues relevant to disabled women. I had to expend a lot of effort to explain why this had to be added to the action plan. In addition, we had to voice our concern multiple times about how the government screening program isn’t accessible to disabled women. Women using wheelchairs are in a higher risk group of cervical cancer and the government’s response shouldn’t be that it’s possible for disabled women to take a pap smear in the regular gynecological examination chair. I’m convinced that if disabled women were present in the Tbilisi City Hall council for disabled people, this issue would be resolved and the government would buy at least one gynecological chair.

Other than the lack of ability to receive adapted services, the medical personnel isn’t ready either – they don’t know how to service a disabled person in a way to avoid damaging them or making them feel insulted. Sometimes, disabled women’s rights activists have to act like bad provocateurs – we tell women what rights they have, but we can’t offer them adequate service, because such services simply don’t exist in our country.

Meanwhile, we wrote in the 2018-2020 governmental action plan for human rights that, according to the evaluation results of the strategy for 2017-2030 and the three-year plan of 2017-2019 for the healthcare of mothers and newborns, if needed, a project for corresponding changes must be prepared and approved, which we don’t have to this day. Because of a lack of gender-segregated statistics, the needs of disabled women and girls aren’t visible anywhere.

To sum up the problems: first, comprehensive research must be done on disabled women’s needs, to correctly and objectively evaluate all the challenges that today prevent disabled women and girls to receive education, to be economically independent, and to receive different sexual and reproductive healthcare services on par with others.

‘’I was born in Gali and I was a completely healthy child. I had polio at the age of five, probably because I wasn’t vaccinated. In the village, I didn’t get proper treatment – a large volume of fluid was incorrectly removed from the spine and something got damaged. Since then, I can no longer stand on my feet.

Because of this condition, my biological mother refused to keep me and I was adopted by someone else. Mzia Gasashvili turned out to be a real human being – she was married, but she didn’t have a child and decided to take care of me. Back then I didn’t have a wheelchair and if we had to go somewhere, my mother would carry me. Once, I remember, I was having a fever and she was taking me to the doctor in the rain and we saw a little girl on the street and my mother took her home too and today this girl is my sister – my foster mother is such an amazing person.

After my mother’s husband died, it got hard for her to take care of me. I grew up and taking me in her hands was no longer easy. I needed someone to take care of me all day. During that period, the situation in Abkhazia became tense and we had financial problems as well. My mother was forced to find a job and I was left without a caregiver. Therefore, by our joint decision, I moved to the Senaki orphanage.

There was a lot of violence and injustice in Senaki orphanage, but it didn’t affect me just because I had someone who cared about me. My mother came to see me almost every week, bringing sweets and gifts. During the holidays, she would take me to Gali. If she couldn’t come, she would have a daily phone conversation with the director, asking about me. So, they couldn’t treat me like that. They knew that if something happened, they wouldn’t be able to hide from my mother.

Contact with my mother stopped during the war in Abkhazia. I heard the news about the horror that was happening in Abkhazia, villages were being bombed. During this time telephone lines were also damaged and I didn’t know if they were alive or dead. A few months later after the fall of Sokhumi, I was called to the director’s office and given the telephone. I heard my mother’s voice – honey, I’m alive and in peace – I was born a second time. My mother moved to Tbilisi and barely survived the hard times of the 90s. So, I stayed in Senaki again and we kept remote correspondence.

I didn’t have a wheelchair until I was 15, I used to move around by crawling. One of the wheelchairs was kept by the administration in the office, when we were organizing concerts for the guests – they would take it out and show them how we used it. Back then many foreigners came to visit, but the administration tried their best no to show them me and other children with disabilities – to avoid showing them our conditions. Once, the Americans visited us and they gave me personally a red Mustang wheelchair. Once the guests left, the administrators threw me off the wheelchair and took it. They probably sold it.

I got my first wheelchair after the parliament passed the Law for ‘’Equality of Persons with Disabilities’’. It would be about 1995. I was then a teenager and being in a wheelchair felt very awkward. I thought, if I would sit in a wheelchair, my life would end. I thought the wheelchair would be a stigma that would affect my relationships. No one taught me that the wheelchair is my ability, my feet, the open door to enter many different spaces. I realized this only when I was already an adult and moved to Dusheti boarding house. Before that, I used to live in isolation.

I live in the Dusheti boarding house a much freer and independent life. If I used to go by a mechanical wheelchair before, today I have an electric wheelchair and I can go out, go to the city, to the stores for shopping. The only thing that hinders me is the environment, which is not adapted for people with disabilities: no public transport, shop, or pharmacies – nothing is adapted. Therefore, I often have to bother other people to get the items I need.

I used to go out more often before the pandemic and I have visited Tbilisi many times to see my mother and my friends. Once, I was even invited to a wedding – the boarding house gave me an adapted car, and when I entered the hall, surprised guests applauded to the fact that I had managed to be among the guests in a wheelchair. Imagine for a second how people are surprised to see a person in a wheelchair. If there was an adapted environment, they would see us more often and we would be a usual part of society.

When I’m going somewhere, I always check beforehand – is the transport, hotel or café adapted? Because I don’t want to bother other people; first, it’s not pleasant and it’s offensive, and second, my spine cannot take rough movements. Therefore, I often refuse to go out.

I have my small room in Dusheti boarding house and I live here with my little cat. In addition to the pension, which is 250 GEL, I also have a small income from my job. I’ve been thinking about returning to my mother, but given my financial situation and the services I need, I think that living in a boarding house will be much easier. Most of all I don’t want to be a burden for someone and force someone to take care of me. And as for the people who help me in the boarding house, it’s their job. So, it makes me more comfortable and less awkward when I use their services.

The only good thing and knowledge left from the Senaki shelter is knitting. I first started knitting socks and knitted some warm socks for the children there, now I can knit clothes of any complexity and even room slippers. I take orders mostly from the staff of Dusheti boarding house because not many people know me and I don’t have access to the spaces where I can sell my knitting. During the pandemic, I also had a problem buying knitting yarns, and the staff gifted me some and I knit and knit in this quarantine. The pandemic restricted my movement even more. I say all the time: when Corona is over, I’ll travel a lot and meet a lot of people.’’

‘’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.’

‘’What I hate the most is when people try to be overly caring. When they see me using a cane, they immediately try to help me, whether I need it or not, or they complete sentences for me. Once, I went to the House of Justice with my mother to get an ID card. The staff didn’t pay attention to me and instead talked to my mother. Even when I asked, the answers were given to my mother. In our society, the stigma towards people with disabilities is so high that our individualism and independence are completely ignored.

My diagnosis is cerebral palsy and Logo neurosis, which means I need a little more time to form sentences than people without this diagnosis. Studying was never difficult for me. In the final grades, I went to school on my own and didn’t need any help.

After graduating from high school, I wanted to continue studying foreign languages and to prepare for exams, but I got low scores and couldn’t get in. This was a prerequisite for my isolation, which lasted for the next 5 years. I had nowhere to go and I didn’t get any encouragement from my family either. Their attitude was like this – because I couldn’t pass the exams, there was nowhere I had to go and I stayed at home, so all these years I didn’t leave the yard of our house.

During this time, my physical and mental statements got worse.

Being disconnected from society made me lose interest in everything. I didn’t have enough energy, I was afraid of new things and my memory was getting worse. I also had difficulties with walking and speech problems worsened as well. I couldn’t read a book – if I read one page, I wouldn’t remember the contents after a minute. Looking back now, I had all the signs that my parents should have taken care of my mental health and should have taken me to a psychologist. However, they didn’t admit the problem – on one hand, they didn’t consider the problem serious; and, on the other hand, they didn’t want to admit it due to the high stigma in the society. I, too, couldn’t realize that I needed psychological help. I don’t remember much from that period, but I remember very well that I really wanted to have a person with whom I could sit down and talk about what was bothering me. The only thing I could find relief in was sleep. I used to take sleeping pills in the morning to sleep during the day. There was no one in the family who would tell me that I shouldn’t continue like this. I’ve spent 5 years in such a condition, which is time that has disappeared from my life.

I was very lucky to find strength in myself – I said to myself that I couldn’t continue like that. The first thing I wanted to do was to continue learning English. Nobody in my family took this idea with enthusiasm, nor did I got support from them. They didn’t believe that I would be able to study again. But later, I proved that I could study and work at the same time.

After 5 years of isolation, I had to face several challenges when I decided to go outside – it turned out that I couldn’t move on my own. My mom used to take me to the language courses, but later I got a cane and started learning to walk with it again. After finishing the language course, I believed in myself again. During this time, with the help of the social agency employment program, I started working in one of the private clinics. It was the first time there where I had to face discriminatory treatment in the workplace. We, as low-level employees, for example, didn’t have access to certain public spaces. Back then, I didn’t know my rights and how to use them, otherwise, I would have taken legal action.

In general, to people with disabilities, the door to employment is not always open. Later, I decided to study such a profession that would help me get a job more easily. I started studying in one of the college’s office specialization courses. At the same time, I was employed in the project ‘’Partnership for Human Rights’’ in a non-governmental organization. The project was about helping strengthen people with mental issues and I was writing blogs about this topic. This organization is on the list of rare employers that care for the needs of people with disabilities. In addition to decent working conditions, here I had the opportunity to learn a lot about the Convention of People with Disabilities, their rights, and their legal application. The project lasted for 6 months and this period helped me find myself and my future interests. Now I know what I want to do – working with the disabled community and their empowerment is in my best interest, and, in the future, I see myself in similar projects. I would like to get experience in the disabled community cases in European countries, to get a better understanding of how they managed to implement a proper system for them.

I only have a few friends from school age. One of them has mental health problems and hasn’t left her home for 10 years now. I talk to her a lot, taking my own example into account, but at such times, family support is of paramount importance. Solving the mental problem begins with recognizing the issue by the family and working together.

Now I’m looking for a new job again, and now I have more work experience and I’m prepared much better. I really hope that the pandemic will not stop me and the employer will show up. Employment and socialization have vital importance for me to constantly be in good shape, not to lose faith in myself, and not to get isolated again, from which I escaped – with a lot of struggle, but I still did.

‘’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.’’

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.

Salome:

,,My diagnosis is bilateral sensorineural fourth-degree severe hearing impairment. In 2015 I first noticed having hearing problems and by that time I went to check up with the doctor, I had already lost 60% hearing in my right ear and 30% in my left ear. I started treatment, transfusions were done to stop the hearing loss process, but it didn’t help me. After some time, I lost 100% of my hearing in both ears. After the research, no specific issue of the problem had appeared, so the doctors decided that my immune system damaged my hearing.

I suddenly lost hearing in one ear, it was very difficult for me and I wanted to cry all the time. I thought, one day if I don’t hear the voice of my loved ones, how could I live? When I lost hearing in my second ear, I was already prepared, even to a point to morally support my concerned friends and relatives. I tried not to stay home all the time, but I still rarely left the house. I was somehow worried, that others had a hard time communicating with me. Then I slowly adjusted to the new normal, and I started going outside and meeting people again.

,,I was 11 years old when I noticed that my family members were telling me something, but I was asking them confusedly – ‘’What? What did you say to me?’’

My hearing was getting worse and within a few months, I was already having a hard time hearing from afar. When I talked to people, I would get close, so that they wouldn’t notice it and to avoid an awkward situation. At first, I didn’t want to admit my problem, I didn’t want to believe that such a thing was happening to me – at that age, it was way too difficult for me.

I started having hearing issues at the end of 2014, and I went to the doctor for the first time in 2017 – I wasted three years. I regret it now because I could have taken preventative measures. I went through all kinds of research and was diagnosed with bilateral neurosensory hearing loss – third, the worst degree. Even though a computer audiogram shows that my hearing is alright, I still can’t understand words and that terribly limits my everyday life. The biggest obstacle for me is that I can’t understand words, I can’t separate them from each other, but I can hear sounds. When I was diagnosed and we found out everything about my disease, we applied for funding from the state – they funded a standard hearing aid, which was put in my right ear, but I couldn’t stand it, so later I put it in the box and send it back. It wasn’t comfortable and it wasn’t making my hearing better either.

Until 2019, I no longer used the hearing device. Of course, the hearing problem was still bothering me, I had to say no to having a job, communicating with people, or talking on the phone… the last time I talked on the phone was in December 2014. In 2019, I started fighting for my rights; I saw that my family didn’t have enough funds to finance my exams, and, at the same time, to buy an expensive device. I hoped people would help too because I had seen many times how a person was able to achieve something with the help of others. I wrote a detailed post about my situation and posted it on the Facebook page of my city. A few days later, a mysterious person called me, who wanted to help me and asked to keep his identity a secret. He funded my examinations and bought a device for my right ear, which costs about 1600 GEL. After examinations, I started wearing the device, but It was still not the best situation – when a person has bilateral hearing loss, wearing a device on one ear isn’t comfortable at all and also, hearing is still not complete, since the sound should come equally in both ears. At first, I had a hard time getting used to this device, the sound wasn’t natural and sometimes I felt like a robot. In April of 2020, that person contacted me again and offered to help me again, or rather forced me to agree to accept help. Of course, I was already feeling awkward, because he also paid a lot of money for the first time for me, but I realized that I wouldn’t be able to buy the second device on my own for a very long time.

At this point, the left ear is almost useless, I can only hear about 10%. The right one is still okay and hopefully, it will last a few more years. Unfortunately, regression continues, and, what’s the most horrible – restoring the hearing won’t be possible, nor will medicine be able to stop the hearing impairment. I hope there will be something new in the future that will help me with it.

At first, my situation was very hard for me, I couldn’t dare to get out of my shell, no one could calm me down and I was always in a bad mood. After some time, I started looking at it with black humor and called myself ‘’a retired old woman’’ – I have a pension, my hearing is impaired, I love crosswords and I just need a dental prosthesis to become be Grandma Teresa, I joked. Nowadays, I got rid of most of my complexes and I’m not ashamed to talk about my hearing problems. However, there are still days when I get tired of my health issues and generally, of living this kind of life. But I have to admit, despite everything, I’m grateful for what I have.