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 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.

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.

“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.

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.

“Some may be surprised, but I was a very quiet child. I didn’t go outside to play and didn’t interact much with other kids, but I loved doing other things, such as reading – as soon as I learned to read, I read all the books we had at home and started borrowing books from neighbors; I befriended every neighbor with a library at home. I also loved to draw, I wrote scripts, directed plays and my plays were often creative.

I studied well in school – I especially liked math and physics. I was taught physics by the director of the school, who sometimes asked my mother if I had read the lessons in advance. My mother replied that not only didn’t I learn the lessons in advance, but even what I did learn, I should have read during the recession, since I read completely different books at home. I always wanted to work in a creative field. In the final grades, I wanted to be a director of the play, and I also had similar interests before, but this was the late 90s when the whole country went through a lot of trouble and my father said that I ought to have such a profession that my salary would cover both mine and my child’s needs. He never said that I had to marry well and someone would take care of me. His morals were like this: you have to be the best in your profession and have enough money that you won’t have to struggle financially. I couldn’t receive a B at school, I was told that besides studying for school, I had no other responsibilities at home.

My parents asked me to be the best. If it was only my desire, I may not have poured all of my energy into it and study all the time and would allocate more time to myself and my interests.