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.’’

Ana:

‘’I also have Wolfram’s syndrome and I have the status of a person with disability too. I don’t have hearing problems, but I have problems with eyesight. I’m a lawyer by profession, have a master’s degree too, but both of my diplomas are kept in a box, I can’t get a job – I usually send my resume, get called for interviews, but in the end, the result is nothing. I don’t send my resume to those vacancies where I can’t work, but there are positions where I can handle tasks with my knowledge, I’ll be able to do that with the audio program and computer. I didn’t state in my resume that I was a person with disabilities. I’ve been through training regarding that and I know it’s my right and my decision to mention it or not. But, of course, I don’t hide it and always indicate that I’m a person with a disability, or I mention it in the cover letter.

At this point, I still don’t stop, I’m involved in various projects, I try to be self-employed, I may not be paid, but it gives me experience. I’ve registered my NGO and have plans regarding that as well.

I’m going to continue my education; I want to apply for a Ph.D. I should mention that bachelor and master programs are funded by the state for all persons with disabilities, and this is great, but they don’t fund a Ph.D. at all. I know a few people with disabilities, who have founded foundations to finance their studies, I’ll try that too. However, to apply for a Ph.D., I definitely need professional experience. My master’s thesis was ‘’Problems regarding regulating legislation of inclusive education for blind and visually impaired people in Georgia’’. I want to develop this topic further, but this time from an international perspective’’.

The project is implemented with the support of UN Women and with the financial support of the Joint Fund for Sustainable Development Goals, within the UN Joint Program – “Transformation of Social Security for People with Disabilities in Georgia”.

The views expressed in the publication are those of the author (s) and do not necessarily reflect the views of the United Nations Women or the Joint Foundation for Sustainable Development.