Marianna Smbatyan

Marianna Smbatyan: Good evening.

Artem Berman: Yes, Marianna, good evening. Can you hear me?

Marianna Smbatyan: Yes. And can you hear me?

Artem Berman: Yes, everything is okay. I mean if there are interruptions in the connection, then I will call again, right?

Marianna Smbatyan: Yes, yes.

Artem Berman: And tell me if you lose me.

Marianna Smbatyan: Of course.

Artem Berman: Well, as I understand, Marianna, you looked through the website, right?

Marianna Smbatyan: Yes, yes, I looked through it. But I’m interested in the following. You created this project to raise the issue of accessibility …

Artem Berman: Yes, I’ll tell you now, initially I was far from the subject of accessibility … I am doing my Ph.D. at a Spanish university, Universitat Rovira i Virgili, in Tarragona. The topic of my thesis is modern trends and the influence of the knowledge economy on the employment of people with disabilities. I mean there are more technologies, there are more opportunities to work remotely, so the question is how all these factors influence the options of people with disabilities in finding employment in the modern economy. I planned to do 20-30-50 interviews with three groups of such people: those who are currently employed, those who worked but don’t work now, and those who have never worked. Probably, they live on a social allowance.

Marianna Smbatyan: Pension…

Artem Berman: Yes. Then I thought, “Well, the scientific work is good, but why don’t I make a website? It can be a kind of social project, where these stories would be published. Well, to some extent, the publication of these stories will help other people in the same situation”…

Marianna Smbatyan: Yes, yes.

Artem Berman: To see the light at the end of the tunnel. Well, this is a whole story.

Marianna Smbatyan: Are these stories, as I understand, not only the stories of residents of Ukraine but of people from all over the world?

Artem Berman: Yes. Absolutely, moreover, initially, I was more interested in the stories of people from Western Europe. For obvious reasons. Let’s say in the EU a social allowance can be about 500-600-700 euros. And, for example, the average salary can be about 1200 euros. Therefore, relatively speaking, the difference between a pension and a salary is not as catastrophic as in Ukraine.

Marianna Smbatyan: What is the area of your thesis?

Artem Berman: Economics.

Marianna Smbatyan: Yes, I understand. Well, cool. Very good. I will be glad to take an active part in it.

Artem Berman: Yes, thank you very much. Which questionnaire will we use?

Marianna Smbatyan: Well, then, let’s use the “I am employed” one.

Artem Berman: Okay, super, I am opening the file. Wait a moment.

Marianna Smbatyan: Okay. Yes, of course.

Artem Berman: Okay, of course, you are much more than those questions that I will ask you. Well, I mean the questions are mainly related to employment and work in connection with the subject, well…

Marianna Smbatyan: Of an academic nature.

Artem Berman: Yes, of an academic nature. It’s clear that, in fact, a person is much more than just a job. A person is also hobbies, also personal life, and some … philosophy – everything, right?

Marianna Smbatyan: Well, I have plenty of those things.

Artem Berman: Nevertheless, the first question is: “Do you allow this interview to be used for the purposes of scientific research?”

Marianna Smbatyan: Yes, yes, I allow it.

Artem Berman: Do you allow this interview to be published on the website iemployed.org?

Marianna Smbatyan: Yes, I allow it.

Artem Berman: Would you like your real name or pseudonym to be used?

Marianna Smbatyan: My real name and surname, yes.

Artem Berman: Your name and surname?

Marianna Smbatyan: I can write it to you. My surname is difficult.

Artem Berman: Yes. Later on Skype.

Marianna Smbatyan: Marianna Smbatyan. Well, I will write you later.

Artem Berman: No problem. Yes, in Skype. Next question, “Contact information.” E-mail or phone number. You can also write it on Skype.

Marianna Smbatyan: Yes, okay, yes.

Artem Berman: How old are you?

Marianna Smbatyan: 29.

Artem Berman: Gender? Well, I think, you won’t surprise me.

Marianna Smbatyan: Well, yes, it’s logical.

Artem Berman: Yes, you will not surprise me. Female.

Marianna Smbatyan: Yes.

Artem Berman: Are you living independently or with parents, or with other relatives, or with a husband, kids?

Marianna Smbatyan: I live with my parents.

Artem Berman: What kind of disability or health problem do you have? Again, provide as much detail as you are comfortable with.

Marianna Smbatyan: I’m not a secretive person, I believe that this is really useful for other people, so I’m quite open. My diagnosis is Werdnig-Hoffmann spinal muscular atrophy, which, first of all, weakens the muscles of the back. Well, that’s it. I get around in a wheelchair, mostly an electric one. I can’t move around by myself because of a lack of strength.

Artem Berman: My understanding is that it is a congenital condition.

Marianna Smbatyan: Yes.

Artem Berman: When was the diagnosis made? It was, probably, made in the first year of life…

Marianna Smbatyan: It was made when I was three or four years old. I mean, it took them a long time to diagnose me. Well, when the professor made the diagnosis, no one challenged it. Well, in principle, everything is obvious. Well, I can’t tell exactly, but the diagnosis was made when I was approximately three or four years old.

Artem Berman: How has the disease you have influenced your life in all its aspects – social, family, private, professional, well, educational? I understand that this is a very open question, but please share the information that you feel is appropriate to share.

Marianna Smbatyan: Well, of course, it affects all aspects of life. Well, when I was a child, I did not worry about it. I easily accepted the situation and believed that everything would be fine. Besides, I was physically stronger. This is a progressive disease.

Artem Berman: Okay.

Marianna Smbatyan: Yes, that is it. I was a little stronger, I could even crawl. So, I studied at school. Well, it was a school program, but I studied at home. I mean, a teacher came to me. That is it. Well, I was an excellent pupil. Well, I always had many friends. Thanks to my sociability. So, I didn’t lack communication. I always made it a point to get along with everyone. The disease did not leave an imprint on that. So, I was always in the public eye, I brought everyone together. My leadership qualities showed. Well, of course, there was a lack of the social aspect of school, when you could crib something from someone, when you could smack someone upside the head. Therefore, I felt the lack of those moments, yes. However, again, I didn’t worry about it, I made up for this with my friends in the courtyard.

Artem Berman: Okay.

Marianna Smbatyan: That’s it. Therefore, it hasn’t influenced me. Then I will say at once – I have an incomplete secondary education. It is not because I lack ability, no. As I said, I was an excellent pupil, but when I was 12, my parents asked me if I wanted to study further. Well, they thought that, well, if I couldn’t walk, then, in principle, well, their idea was, would I really be finding a job for myself? Therefore, why should I suffer through studying.

Artem Berman: Okay.

Marianna Smbatyan: That’s it. Then, even though I was an excellent pupil, I was a little lazy, so I chose the option of not continuing with the school curriculum. However, everyone still thinks that I have at least two university degrees. I don’t hide it at all, I am not ashamed of it at all, I talk about it everywhere, because I want to show that how interesting a person is depends not only on a piece of paper, not only on the education that is hammered into their heads, but on how the person can develop himself/herself. I mean, I am sure that I can give a head start to people with a red diploma. That’s from my experience.

Artem Berman: Okay.

Marianna Smbatyan: So, first of all, after finishing the 7th grade, I idled a little, I mean, I devoted myself to rest, and then my parents arranged private education for me, because I had won a contest of children’s drawings by that time. This inspired me as well as my parents. I started to take lessons from a professional artist and devoted myself to many-sided development again. So, my education is completely private, and I don’t feel deprived of anything. Again, I can give a head start to many people who have the privilege of having got an education back then. At such moments, we have something … studying…

Artem Berman: Got it. Yes, I think we will still develop this topic to a certain extent during the questionnaire, but, in principle, I’ve got your answers. How did your social rehabilitation begin? What was the process of returning or, well, in your case, apparently, joining the society?

Marianna Smbatyan: Yes, I understood the question. As I said, when I was a child, I was very open-minded, well, and very, very, very sociable. I was not at all shy about the fact that I was in a wheelchair. But at some point, most likely it was at the awkward age, well, I had it a little later – at 16. From the age of 16 I gradually became reserved, I felt uncomfortable being on the street. People are not accustomed to people with disabilities in Ukraine. Many people turn around, look, just stare, and it was quite difficult for me at that time. Each time it was more and more difficult, I lived a sheltered life. Over two, three, four years I started to go out less and less. At some point I decided for myself that there was nothing for me out there, I did not want to be there, I was uncomfortable there; why should I feel discomfort if I can be where I feel comfortable. And I stopped going out. Well, I could go out literally once a year, if I was forced, literally kicked out. That’s it. I mean, that was not the best period. I mean, I felt free on the Internet, I had the Internet, and I was a queen there. I hosted broadcasts on the radio, Internet radio. I had many friends, I wrote books, I did a lot of things and talked a lot, but that was on the Internet. Outside the Internet, I was uncomfortable, I did not want to go out. Until a certain time, when, most likely, it ceased to be so obvious. Firstly, when I had a boyfriend, and his belief in me gave me self-belief. And then I began to go out somehow. I mean, I didn’t care about other people’s glances; on the contrary, I responded with a glance and said “Hello”, “What else?”, “How can I help you?” Well, I became more liberated somehow. Then I joined a club of active people with disabilities, I emphasize – the active ones. And when I saw their rather active position, I decided for myself, if they were so open and everything was okay, then why couldn’t I be the same. And then I also became, I joined an active position in life. Well, it’s been about seven years already, probably, something like that. Six or seven, about seven years, that I have had an active life position, and I do not care what people think about me if they are not my loved ones.

Artem Berman: In fact, you answered the following two such sub-questions, namely what helped and what the obstacles were during the process of coming back to society. If there is anything else to add, then please add it; otherwise, we’ll move on.

Marianna Smbatyan: Well, I just want to sum up. In what I said, example is very important. I mean, it’s important for me to have the faith of the people around me; it’s, probably, not just me, it’s every person. And in my case, well, I want to say that it probably helps everyone – it was the faith of my loved ones, backed by the examples of other people. Positive examples have an effect, they are like a kick in the ass and a carrot in front. Well, and these moments are always very important, yes. I agreed to this project because I hope that my example will be an example for somebody, and that person will think about it and will also believe in himself/herself.

Artem Berman: Look, the next question for you is about education. What influenced your choice of specialization? If it is not a formal specialization at the university, then just why are you doing what you are doing? How did you get the knowledge you need? As I understand it, you are quite actively engaged, relatively speaking, in a number of creative things…

Marianna Smbatyan: Well, first of all, I think the most important thing … Well, most often people choose something because they are forced, they are forced to make one or another choice, but in my case it was formed from what was mine. There is a set of talents in every person. Well, basically, in my case it’s a creative set of qualities in my brain, mind, body and so on. It so happened that I have loved drawing for as long as I can remember. I loved everything that was connected with creativity – from painting to acting. Actually, I have realized all of it in my life. Well, as I said a little earlier, it was when I won the children’s drawing contest. Although I want to say at once, when I submitted my drawings to the contest, no one probably told me, “Oh, you are a genius, oh, you are a talent! You will succeed.” Maybe it’s good, but when submitting the drawings to the contest, I was not … I was more than sure that I wouldn’t win, I wouldn’t take any place, and in general, I simply submitted them because I was asked. And when I was told that I had won, I was in shock. I did not believe it at all, I thought, “What’s that? It’s impossible! It’s not me!” When I realized this, the shock wore off, I realized that it was me, I really had won, I deserved it, and then it was suggested that I do it at a professional level, that I develop it. Well, and, of course, as I said, I studied with a teacher of [interruptions], and developed after that. In fact, I will say that painting and art are so accessible that they develop not only motor skills, not only cognitive and graphic skills, but also intellectual ones. Therefore, it allowed me to study history, design, and political matters, that’s it. That is, well, there are different aspects to be studied. Well, that’s about painting. Now I am a member of the youth section of the National Union of Artists of Ukraine, the youth department. I also take part in various exhibitions not only in Zaporozhe, where I live, but also in different cities of Ukraine. I plan to go beyond Ukraine, to exhibitions abroad. I have already had six professional exhibitions, some of which I organized myself, and some of which people helped me organize. I also – well, in the sense that I work as a painter – produce pictures to order. I also design books, creating the design for books and a publishing house. I mean, everything that is connected with art – I do it, I love to do it. And, of course, what I love most is simply to paint portraits of people, putting in what I see in this or that person, regardless of whether I know this person or he/she is absolutely unknown to me. I mean, I really love it, to scrutinize the matter thoroughly. To some extent, it is something like psychology, which I also like. That’s it. Is it okay to talk about my other activities?

Artem Berman: Of course! The more information you can provide, the better, because some things that you say, while they may seem unimportant to you, in fact, are very important.

Marianna Smbatyan: Well. Yes, as I said before answering this question, the most important thing is the potential of the person. One of my skills besides painting was also acting. Being at home alone, I loved to imagine myself as an actress with an audience, with everyone, on the stage. I loved to repeat all the roles, memorizing and playing them, but at the same time I allowed myself to fantasize, just realizing that it was just my dream. I really wanted to be an actress, but I never did it because I couldn’t walk. At least, that is what I was sure of for a very long time. Now, having grown up and taken an active social position in the city’s life, the idea somehow came to me. There were so many successful projects in which I took part; they led me to the idea: why not make an inclusive play, where some actors would be healthy and some would be people with disabilities. The plot of the play literally took shape in my head. I saw it literally as if on TV, pictures in my head. It was literally down to specific words, in detail. And I had set my sights on this so much that after a couple of days I went to a meeting of the club of people with disabilities, which I spoke about, and invited them to take on such a production. That I would write the script, I would direct, and they would become actors. Well, I’m also one of the actresses. And the guys at first took it as … It’s something … This is … “How will we manage it? We do not know.” However, my burning eyes and my “let’s, let’s try”, probably, persuaded them to agree. Since all of us are not professionals but amateurs, and we wanted to make a good product, we worked on the production, which is called “A few steps to happiness”, for about a year. It presents seven small stories, each of which deals with the interaction of healthy people with people with disabilities, their victories, their defeats, their joys, sorrows, etc. Each story deals with some stage of the life of any person. The premiere was in 2014. Everyone was so surprised… I want to say that while I was preparing the production, many people told me that we wouldn’t be successful, that it was all messed up, that we were non-professionals and in general there would be few spectators. Well, I mean, many people, even loved ones, explained this to me very clearly. Sometimes I almost let myself believe it, I cried, I was afraid that everything would really be that bad. But then I kept going, told myself that everything you start should be brought to a conclusion. When the premiere took place, and we stood onstage at the finale, the audience… I must say at once that the hall was not just a full house, it was the fullest house. There was not enough room for many people. Many did not have enough space. People just stood there. And those who did not have enough space to stand just left, because there was no room even to stand. There were many spectators. All of them gave a standing ovation and even… Even two-meter-tall military men, broad and strong, came up to us with tears in their eyes. When I saw it, such an enchanting victory, I realized that there was no need to listen to anyone. If you see a prospect, at least a little ray of light, you need to try to do something, no matter who hounds you, no matter who says you won’t achieve anything. I saw this little ray, so I tried to make it bright. I’m glad that it happened. Now I am … The first performance, as well as the subsequent performances of this show, this idea, was charitable. I mean, we sent and still send money for charitable purposes. Then we toured with the same performance. We went to Lviv, we were invited there. That was also a charitable event. Now we are preparing a new production, a new play. It is also based on my script, co-authored with an actress from my troupe. And it’s very exciting, because we always bring in different people. It is very inspiring and pleasing when you see that people want to be involved, want to help. That was how my dream came true, and I have an idea for another script in the works. And I also do vocals. I always loved to sing, but I was too shy to sing in public. I sang at home, alone, with my family members. My loved ones recommended that I do this more professionally. But then again, I thought it was inappropriate to spend money on vocal lessons, because I had this conviction: in show business you either sleep your way to the top or pay your way to the top. I do not have much money, and sleeping your way to the top is not an option either. So, I thought, I do not need it. But at some point my illness began to affect my breathing. And then asphyxia sets in. And at some point I nearly died; it was a year and a half ago. I was barely recovering, I was already choking, almost fainting, I was already short of oxygen, I was blue, the doctors barely saved me. And when I had recovered and I was practically drained, I thought that I needed to do something about my lungs, because when I used to sing, I could breathe more easily. By then I had dropped the lessons for three years, had not sung at all because of psychological barriers. And it became harder for me, I became much quieter; although I was told earlier that I was very loud, I became very quiet. And I realized that show business or not, I needed to help my health. And that became the main task, the goal, the basis: health. All in all, I decided to take vocal lessons. And it really had a positive effect on my health, and it … influenced my mood so much that every vocal lesson, every lesson for me … I can be just depressed, I am sad, all my thoughts are sad, I even think, maybe I should cancel the vocal lesson, how can I sing in this mood. However, I force myself never to back out – it is very harmful – and still overcome myself and go on. In the middle of the lesson, I’m already cheerful, I already want to sing, I’m already like, “let me go on stage”, that’s it.
And I have already had the experience of performing on stage as a vocalist repeatedly. I do not dare to call myself a singer and a vocalist now, but I already have some experience, and it makes me happy. And every time this experience goes one step higher. I’m glad that it helps my health, and helps psychologically … And plus, people say that they like to listen to me, so … I perform at charity auctions, balls, and if I can help with something, then I’m delighted. If anything, if you need them, I can send them to you; I even have two clips that I was given.

Artem Berman: Yes, it will be super, of course.

Marianna Smbatyan: And, I want to say, now I’m preparing something – I do not know if it’s necessary or not – I still like … well, not that … I like to be photographed, like most girls, but I like to do everything with quality, and photo shoots as well. At some point, I came up with the idea, the idea of why, well, at least it already exists abroad, but in Ukraine, it’s so … There are just a couple of girls, and those are in Kiev. And since it is very undeveloped and not common, I mean, a model agency where people with disabilities could be models. I do not mean a model on the catwalk, although this is also important, it is also necessary. At least a photo model; it’s also desirable for this to become more widespread, and I have come up with the idea that we need to do something about this, and I plan to create a photo project. It will be for people with disabilities this summer. This project is already called “Strong in spirit.” At least that is what I plan. All participants, the models, will probably have visible disabilities: either in a wheelchair or with a walker, with crutches. The main thing is that the disability can be seen visually. They won’t just be photographed as themselves; they will take on the images of world-famous personalities from the history of cinema or literature. Thus, I want to show society, to look at famous and beloved personalities – what they would look like with a disability. I mean, to look from the other side. People actually idealize. Alexander Sergeevich Pushkin! Look! I do not know … Somebody else. Cinderella is also ideal. What if they had such a condition? I want to show the world these kinds of personalities. Plus, to help them believe in themselves and try some interesting, interesting adventure. I hope this will get a social response…

Artem Berman: Yes. The idea, of course, is also super. I can imagine. Really interesting. As I can see, you do not let yourself or others get bored, which, in fact, is right. Next question. Do you receive any help that relates specifically to your disability from the organization in which you work? What kind of help? Since you work for yourself, it seems that this is not an organization …

Marianna Smbatyan: Well, yes.

Artem Berman: … nevertheless.

Marianna Smbatyan: Just money from the state.

Artem Berman: Got it. But yourself… Have you somehow equipped the entrance, I do not know, some lifts?

Marianna Smbatyan: Our family equipped everything in the entrance ourselves. We rented, moved to the first floor because the elevators often break down. My parents made a ramp from the balcony with their own hands. Everything was made with their own hands. The only thing I got from social security, if I may say so, is the electric wheelchair. That, that’s the only thing. But I am very grateful for that. These are our newly found legs, let’s say. Apart from that – nothing. The only thing I can say about social support: on the social side, sometimes the city authorities, well, they sometimes support me in realizing my ideas. Something like that. But that is probably not what this question is about.

Artem Berman: In any case, what you are telling reflects the reality, at least, of Ukraine. Well, in any case, it’s interesting. Again, if one day we decide to compare the realities of Ukraine and other countries, for example, in Western Europe, in general, all this information will be surprising for them.

Marianna Smbatyan: Yes, it will be a tremendous difference! Apparently, it will be the Mariana Trench.

Artem Berman: Yes, exactly, exactly. The question about the development of your career… In principle, you have already said that you are engaged in theatrical art, work as an artist…

Marianna Smbatyan: Sorry for the interruption, I forgot to say. I wrote to you that I worked as an administrator for a fashion designer for a limited time. Should I tell you about it?

Artem Berman: Yes, of course, tell me. It’s interesting! Thank you.

Marianna Smbatyan: Yes. It turns out that I am quite a recognizable person in my city and I often give interviews, that’s why some people know me. And this fashion designer, she is, of course, smart, luxurious, and quite famous in Ukraine. And she lives in our city. And she, she is a genius in designing clothes, but she does not understand technical points at all, so she approached me, knowing that I’m good with computers; she asked, or more precisely, she offered me the job of administrator. I mean, to work with clients, to create databases and so on. Well, I agreed. She especially – even though she lived on the first floor, it is known that it’s still a minimum of 5-6 steps even on the first floor…

Artem Berman: Well, yes.

Marianna Smbatyan: And especially for people in a wheelchair. Therefore, she specifically ordered ramps so that I could go up to her place. Her workers helped me go up such a steep ramp. I worked like this for some time. It was quite an interesting experience. But then, let’s say, “good” people stole them for scrap metal…

Artem Berman: I understand … “Good” people have that character trait. Right down to the cemetery fences.

Marianna Smbatyan: Yes, yes, absolutely. And literally … There is a code on the door … I do not know how it happened. Either a neighbor, or something, but somehow, in general, they stole them. Then we couldn’t get along well… It was influenced not so much by that inaccessibility, but by the fact that both she and I … To some extent, I felt relieved, because it was not my thing. Well, then I stopped working there, devoting my time to things that were more interesting to me.

Artem Berman: I understand, I mean, things that were more connected with creativity than with some administrative functions.

Marianna Smbatyan: Yes. I have an unquenchable desire to live, a desire for adventure and something that does not allow me to administrate.

Artem Berman: I understand that your further development is also related to creativity, right, one way or another, in one form or another?

Marianna Smbatyan: Yes, yes, that’s right. I plan to continue to develop in these moments, in all that I have already named. If there is time and inspiration, I want to develop a bit as a writer, finish the book I am writing. Who knows what this new desire will lead me to, but we need to say “yes” to everything, to strive and develop in absolutely different directions.

Artem Berman: What are the greatest difficulties or challenges for you in your disability, in the condition that you have?

Marianna Smbatyan: It’s probably everything taken together. Of course, I have to overcome myself, but I want to say that I have to overcome myself because society does not always react correctly to people like me, to people with disabilities. If society were more open, if people like me were indistinguishable, yes, in the perception of healthy people, then it would not be necessary to overcome yourself in all these moments. I mean, the social moments are hard. Plus, of course, the physical need to be, the need or necessity, so to speak, to always be dependent on the people around you. I mean, sticking to such an active position is very difficult; even something as elementary as just going out, taking the wheelchair out – it requires the help of other people. It’s very, very hard. Especially with such a proud character … It’s very hard. Especially to know that you are dependent on other people. This is psychologically and physically difficult.

Artem Berman: I get it.

Marianna Smbatyan: And plus, not everywhere, of course, but there are a lot of difficult moments; the lack of normal ramps also has an effect.

Artem Berman: To some extent, the next question is probably connected with the previous one. What was the main reason that you started working? Is it just an economic reason or not an economic one? And what motivates you to keep going?

Marianna Smbatyan: First of all, it is an economic reason, of course. As they say, war is war, but lunch has to be on time. So I think … Sometimes I have to take orders that are either uninteresting to me, or I’m tired of them, and I just want to rest, lie on the couch, watch a show. But I understand that this is a job, and it is out of the necessity for financial support that we have to work, of course, and get down to the work, well, or the orders that are not so interesting, but you do not want to do a shoddy job either. First of all, this is a financial necessity. I would like to expand it, of course. It’s because people with disabilities have even more needs, to some extent, than healthy people. The fewer real opportunities, the higher the financial needs, unfortunately. Even to go somewhere: a healthy person just gets in a regular taxi or on a bus and goes. A person with a disability does not need a regular taxi, but a social one, etc. And it is also desirable to hire someone to help. And if I want to go somewhere, it’s not just one person. You need a lot of money. The situation is even worse with traveling. All these desires have to be kept only in your head. First of all, because of finances. Therefore, yes, I want to earn more just to, elementarily … Not to go buy a yacht for myself, but just to live a human life. This requires a lot of money. Well, plus, I will not hide it, many people who have big money still prefer to work, because the need to be needed, this is inherent in one way or another in every person. So, when I see, “Wow, you made it so cool, we are so pleased” – it brings not only money but also moral satisfaction. However, the financial reason is in first place.

Artem Berman: Can you imagine yourself leaving work and stopping working altogether? And what would be the consequences?

Marianna Smbatyan: Yes, I can imagine. Say I have earned a lot of money, and I think, “let this work get out of here.” I think I’ll have a rest. I’m going to London, Paris, traveling. Then I would leave my work. If we are not speaking in jest, though. Jokes are jokes, but if I realized that I had enough funding to afford, again, not always, but sometimes not working. Not working all the time… I do not know … You would have to be an amoeba to never work, never do anything. I mean, only financial stability could be the reason for me not to work.

Artem Berman: Take a break for some time.

Marianna Smbatyan: Yes, yes! Otherwise, I just do not know. Doing nothing – it’s just degradation. A direct path to degradation. Active people, probably, do not even know how to rest for a long time.

Artem Berman: Absolutely. The next question is obvious, but I will ask it. Do you perceive work as an important way, method of rehabilitation and integration of people with disabilities, in fact, into society?

Marianna Smbatyan: Yes, obviously. And I have said it many times in interviews with the media when I was asked the question of what is necessary for a better perception of people with disabilities by the world around them. What is necessary for that? And I answered everybody, and I will answer now – it’s such an interconnected chain. Of course, I understand, it’s easier abroad concerning the accessibility of roads, etc., yes, maybe in some places it’s more accessible than here. If things were more accessible, people with disabilities could go out much more easily and without any issues. Therefore, it would be easier for them to find a job.
Consequently, society, noticing active … Not like when someone sees a person in a wheelchair once a year: “Aah …” Like an alien. Well, I exaggerate, but that is how they perceive … a person in a wheelchair … But if they always saw such people everywhere – someone on the bus, someone going past, someone at the disco. It would be … They wouldn’t be distinguished from healthy people, because they would be here and there. Of course, this is necessary. If people could work normally … This is employment, this is a person’s livelihood and confidence. I mean work; if a person is employed, he/she does not sit and think: “What could I do, maybe I should drink? It’s because my life is so hard.” Well, in order not to do this, you need to have your place in life. It is critical that someone needs you. It’s probably the most important thing to find your place. And when a person knows that he/she gets money for this, I mean he/she can afford something. Plus, he/she does something useful for someone. It’s fine. This is very necessary, more or less equally, for a healthy person and for a person with disabilities.

Artem Berman: I understood you, yes. What does your family think about your active position? That you work, that you earn money?

Marianna Smbatyan: To be honest, at first, when I was just making my first, figuratively speaking, steps in active life, my parents were worried, especially my mother. She was like, “How come she is not next to me? How come?” If something happens. What if I fall down… What if a car runs over me, what if something else happens… What if maniacs, etc. She has worried too much ever since I was born with a disability. When a person is physically restricted and dependent on relatives from birth, he/she is cared for like a baby bird. And when the baby bird wants to fall out of the nest – it is immediately, “What? You will smash into pieces,” etc. It was a bit hard. I was always told: “Are you kidding?!” Sometimes it still happens. “What? You cannot! You will not make it! What if something happens to you.” But in general, apart from these worries, I see that they are proud of me. Dad is so ecstatic. He thinks that I am the most brilliant person on the planet. You know, as a parent, yes. Of course, my mother worries, but I see that she is proud of me too.

Artem Berman: I understand that this is your father, but allow me a joke: if you have a persecution mania, this does not mean that you are not being followed. I mean if your father thinks that you are a genius, this does not mean that you are not.

Marianna Smbatyan: Well, maybe, maybe, yes. Well, but, in general, yes, they are proud. Sometimes even … I try not to think a lot – oh, a healthy person, or something like that. Sometimes, you know, there are such feelings when I see an absolutely healthy person with plenty of opportunities, but he whines that something is wrong, sadness, yes, and so on. And I really want to, but unfortunately I cannot afford it, but I just want to grab him/her, shake him/her up, knock him/her against a wall, so that he/she just thinks about his/her possibilities and… Sometimes it happens that way, what and where this realization is.

Artem Berman: The next question: is your work connected with your education? Yes or no? Then, do you think that higher education gives a person more opportunities in life, and how do you maintain your level in your profession?

Marianna Smbatyan: I believe that … Of course, a piece of paper is good, but, unfortunately, nowadays it is not the key thing. I mean, sometimes they see, oh, a person has a diploma, probably we should hire him/her. But, in fact, I have encountered many times the fact that, again, I always say it with pride, I have an incomplete secondary education. I always tell everyone about it, because I want to make the point that the main thing is not this; the main thing is that if a person is moving, studying, has a desire to move in the right direction in some area, then he/she does not have to enter any university. If he wants to find a job, then, in principle, it is a necessity, of course, because in some spheres a person just won’t be hired without a piece of paper, because the person, well, has not proved it. Well, it’s like proof that you know how to do something.

Artem Berman: I understand what you are talking about. In fact, higher education in general in Ukraine, as in Russia, is something that has been devalued, because it is believed that almost everyone should have it. As a result, say, we have a lot of lawyers who have fundamental ideas about jurisprudence… If the policeman is an officer, he is a lawyer here. Sure! Therefore, I really understand what you are talking about. The next question is about money. Do you have any financial assistance from the state?

Marianna Smbatyan: Yes, this is a pension.

Artem Berman: What percentage of your income does this pension make up? My understanding is that we can say the pension amount out loud. It’s something around $100, right?

Marianna Smbatyan: Oh, I do not really understand dollars. It is 2500.

Artem Berman: That is about $100. A bit less. That’s it. Accordingly, the exact percentage is not necessary, but is it significant for you, or, let’s say, not so significant – do you live on what you earn?

Marianna Smbatyan: Well, I’ll probably say 50/50. The fact is that my profession, unfortunately, is not so stable. I mean I do not have a stable monthly salary.

Artem Berman: Project work, it’s clear.

Marianna Smbatyan: Yes. I mean today I can make very good money, and tomorrow I cannot. I mean it is unstable, yes. Therefore, I guess I would say that 50/50. Something like this.

Artem Berman: Got it. Are you satisfied with the current level of your income?

Marianna Smbatyan: No, I am not. I would like to look into the eyes of a person who would say “yes.”

Artem Berman: Next, look, we have the last question, but it’s a detailed and creative one. I will ask you to describe yourself in your own words. In order to do this, I’ll start the phrase, and you’ll finish it. Well, roughly speaking, I will say the first two words in the sentence, then the ellipsis, and you say what you think is necessary to say. There are 6 open sentences. The very first and most difficult: “I …” Tell me the first thing you think.

Marianna Smbatyan: I am an ambitious leader, sometimes unsure of myself. Sometimes I am cruel. I always want to win on my own.

Artem Berman: I understood you. Then, “Before the injury or illness I was …”. Well, you were just a kid then.

Marianna Smbatyan: Well, yes. Most likely, probably, before I realized that I was disabled, that I was a person with a disability. Well, I was insanely confident and believed that everything was fine. I was very confident. I do not know why. Then came the stage of uncertainty, which I am still trying to overcome.

Artem Berman: Okay. Next, “I can …”. Or, “I am capable of …”.

Marianna Smbatyan: I can do anything if someone believes in me and supports me.

Artem Berman: Cool. So, “In future, I see myself …”.

Marianna Smbatyan: A rock star.

Artem Berman: It’s an option.

Marianna Smbatyan: And an artist.

Artem Berman: And the last two. One question is such a negative question, the other one is positive. Negative one, “I’m afraid …”.

Marianna Smbatyan: I’m afraid of failures, I’m afraid of pain and I am afraid to suffocate.

Artem Berman: Got it. And the last one, “I want …”

Marianna Smbatyan: I want to become prosperous, rich and successful.

Artem Berman: Cool. Well, look, Marianna, in fact, we’re done. I asked you all my questions. I got all your answers. Thank you so much. Keep in touch. Bye!

Marianna Smbatyan: Yes, goodbye!