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 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. 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. in Spanish university Rovira and Virgili in Tarragona. The topic of my thesis is the modern trends and influence of the economy of knowledge on the process of 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 people’s with disabilities options 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 the social allowance.

Marianna Smbatyan: Pension…

Artem Berman: Yes. Then I thought, “Well, the scientific work is good, but why don’t I do the 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 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 the residents of Ukraine but from the people from all over the world?

Artem Berman: Yes. Absolutely, moreover, initially, I was more interested in the stories of people from Western Europe. Because of obvious things. Let’s say in the EU a social allowance can be about 500-600-700 euros. And, for example, the average salaries 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: Economy.

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. What questionary 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 a hobby, it is also personal life, and some … philosophy – everything, right?

Marianna Smbatyan: Well, I have enough of these points.

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

Marianna Smbatyan: Yes, yes, I am allowing.

Artem Berman: Are you allowing this interview to be used as the publication on the website iemployed.org?

Marianna Smbatyan: Yes, I am allowing.

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

Marianna Smbatyan: My real name and surname, yes,

Artem Berman: You name and surname?

Marianna Smbatyan: I can write you this. 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 in 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 logically.

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 the 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 data as it is comfortable for you.

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

Artem Berman: My understanding it is born condition.

Marianna Smbatyan: Yes.

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

Marianna Smbatyan: It was made when I was three-four years old. I mean, they diagnosed me for a long time. Well, when the professor diagnosed me, no one challenged the diagnoses. Well, in principle, everything is obvious. Well, I can’t tell exactly, but the diagnosis was approximately made when I was three or four years old.

Artem Berman: How 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 provide the information that will be appropriate for you to say?

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 accept the situation and believed that everything would be fine. Besides, I was physically stronger. This is the 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 teacher came to me. That is it. Well, I was an excellent pupil. Well, I always had many friends. Thanks my sociability. So, I didn’t have lack of communication. I always made it a point to get along with everyone. The disease did not leave the imprint on it. So, I was always on the public eye, I brought everyone. Leadership qualities were affecting. Well, of course, there was a lack of this social aspect in the school curriculum, when you could crib something, when you could smack someone upside the head. Therefore, I felt the lack of these 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 have the lack of 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 such that I aimed at finding a job for myself. Therefore, why I should suffer from studying.

Artem Berman: Okay.

Marianna Smbatyan: That’s it. Then even though I was the excellent pupil, I was a little lazy, so I chose the option not to study with the school curriculum. However, everyone still think that I have at least two higher educations. I don’t hide it at all, I am not ashamed about it at all, I say about it everywhere, because I want to show that the interest of the person depends not only on the paper, not only on education, that is hammered in their heads, but on the fact how the person can develop himself/herself. I mean I am sure that I can give a head start for people with the red diploma. It’s in my experience.

Artem Berman: Okay.

Marianna Smbatyan: So, first of all, after finishing the 7th grade, I was a little pampered, I mean, I devoted myself to rest, and then my parents sent me for getting private education, because I had won the 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, I don’t feel deprived of anything. Again, I can stoke many people, who have privileges that they got education at the time. 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 shy because of the fact that I was in a wheelchair at all. But at some point, most likely it was in the awkward age, well, I had it a little later – in 16 years. Since I was 16 years old I became reserved gradually, I felt inconvenient to be on the street. People don’t accustom themselves to people with disabilities in Ukraine. Many people turn around, look, just peer, and it was quite difficult for me at that time. Each time it was more and more difficult, I lived sheltered life. One day during two-three-four years I became to go out less and less.At some point I decided for myself that there is nothing for me here, I do not want to be there, I’m 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. 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 conducted broadcasts on the radio, Internet radio. I had many friends, I wrote books, I did a lot of things and talked a lot, but it’s on the Internet. Outside the Internet, I was uncomfortable, I did not want to go out. Until some time, when most likely it has ceased to be so obvious. Firstly, when I had a boyfriend, and his confidence in me gave me self-believe. And then I began to go out somehow. I mean, I didn’t care about someone’s glances; on the contrary, I responded with a glance and said “Hello”, “What else?”, “How can I help you?” Well, I became more emancipated somehow. Then I joined the 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 I couldn’t be the same. And then I also became, joined the active position of life. Well, it’s already about seven years, probably, something like this. Six or seven, about seven years, I’m in an active life position and I do not care what people think about me if they are not my beloved ones.

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

Marianna Smbatyan: Well, I just want to sum up. In that information I said, the example is very important. I mean, it’s important for me to have the faith of surrounding people, it’s, probably, not just for me, it’s for every person. And in my case, well, I want to say that it probably helped everyone – it was the faith of beloved people, based on the examples of other people. Positive examples are affected, they are as a kick in the ass, and a carrot in front. Well, and these moments are always very important, yes. I agree to this project, because I hope that my example will be an example to somebody, and the 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 have you got 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, it’s a creative set of data in my brain, mind, body and so on. It happened that I always loved drawing for as long as I can remember. I loved everything that was connected with creativity – from painting to acting. Actually, I realized everything in my life. Well, as I said a little earlier, it was when I won the contest of children’s drawing. Although I want to say at once, when I gave 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 I, when giving drawings to the contest, I was not … I was even more sure that I wouldn’t win, I wouldn’t take any place, and in general, I simply gave them, because I was asked. And when I was told that I won, I was in shock. I did not believe 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 won, I deserved it, and then I was suggested to do it already on a professional level, to develop it. Well, and, of course, as I said, I studied with the 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 graphic, but also intellectual. Therefore, it allowed me to study history, design, and political moments, that’s it. That is, well, there are different aspects to be studied. Well, it’s about painting. Now I am a member of the youth section of National Union of Artists of Ukraine, the youth department.I also take part in various exhibitions not only in Zaporozhe, in which I live, but also in different cities of Ukraine. I plan to go out Ukraine, exhibitions abroad. I already had six professional exhibitions, some of which I organized by myself, some of which people helped to me organize. I also – well, in that case that I work as a painter – produced pictures cut-to-measure. I also design books, creating the design for books and publishing house. I mean everything that is connected with the art – I do it, I love to do it. And, of course, the most beloved is simply to paint portraits of people, introducing 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, scrutinize the matter thoroughly. To some extent – it is something like a 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 may seem unimportant to you, in fact, are very important.

Marianna Smbatyan: Well. Yes, as I said before answering this question, the most important is the potential of the person. One of my skills besides painting was also acting profession. Being at home alone, I loved represent myself as an actress with the 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. So, I’ve been sure for a very long time. When, now, having grown up and taking an active social position in the city life, so the idea somehow came to me. There were so many successful projects, in which I took part; they moved me to the idea, why not make the play inclusive, where some actors will be healthy, some of them- people with disabilities. The plot of the play was literally depicted in my head. I saw it literally as on TV, pictures in my head. It was literally up to some words, in details. And I was so set on my sights on this, that after couple of days I went to a meeting of the club of people with disabilities, about which I spoke, and invited them to take such a production. That I would write the script, I put the directors, 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 we manage it, we do not know.” However, my burning eyes and “let’s-let’s try”, probably, persuaded them to an agreement. Since all of us are non-professionals, but amateurs, and we wanted to make a good product, we was working on the production, which is called “A few steps to happiness” for about a year. It describes 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 part of the life stage 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 this is all messed up, that we are non-professionals and in general there will be few spectators. Well, I mean, many people, even beloved ones, explained me this very clearly. Sometimes I almost let myself to believe in it, I cried, I was afraid that everything would be really so bad. But then I continued, told myself that everything you start should be brought to the 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 the full house, but 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 place for standing. There were many spectators. All of them did a standing ovation and even… Even two-meter high military men, wide and strong came 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 the perspective, at least a raylet, you need to try to do smth whoever persecute you, whoever say you wouldn’t get anything. I saw this raylet, so I tried to make it bright. I’m glad that it was. Now I am …The first performance, as well as the subsequent performances of this show, this idea was charitable. I mean, we sent and send money for charitable uses Then we had the same tour 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 in my script in co-authorship with the actress from my troupe. And it’s very exciting, because we always connect up different people. It is very inspiring and pleasing when you see that people want to be connected, want to help. That was how my dream came true, and I have the idea of another scenario in the project. And I also do vocals. I always loved to sing, but I was very shy to sing in public. I sang, being at home alone with my family members. My beloved ones recommended me to do this more professionally. But then again, I thought it was inappropriate to spend money on vocal lessons, because I had such a persuasion: show business is either to sleep your way to the top or to pay your way to the top. I do not have much money, but to sleep your way to the top is also not the option. So, I think I do not need it. But at some point my illness began to affect the respiratory process. And then asphyxia comes. And at some point, when I nearly died, it was a year and a half ago. I was hardly recovering, and just was already choking, almost fainting, I was already short of oxygen, I was blue, I was barely saved by the doctors. And when I was already recovered and I was practically drained, I thought that I needed to do something with the lungs, because when I used to sing, I could breathe easier. Then I dropped studies for three years, did not sing at all because of the 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 either show business or not, but I needed to help my health. And it became the main task, the goal, the root because of health. All in all, I decided to do vocal lessons. And it really had a positive effect on my health, and so … influenced my mood that every vocal lesson, every lesson for me … I can be just depressed, I am sad, all thoughts are sad, I even think, maybe, to cancel a vocal lesson, how I can sing in this mood. However, I force myself never to go back – it is very harmful – and still overcome myself and go on. In the middle of the process, I’m already cheerful, I already want to sing, I already want ” let me go on stage”, that’s it.
And I already had experience of performing on stage as a vocalist repeatedly. I do not dare to call myself a singer and a vocalist ow, but I already have an experience, and it makes me happy. And every time this experience becomes one step above. I’m glad that it helps my health, and helps psychologically … And plus people say that they like to listen to me, so … I’m at charity auctions, balls, and I can help something, then I’m delighted. If anything, if you need, I can send you, I even have two clips that I have been given.

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

Marianna Smbatyan: And, I want to say, now I’m cooking – I do not know if it’s necessary or not – I still like … well, not that … I like to be photographed as most girls, but I like to do everything qualitatively, and photo shoots as well. At some point, I came up with the idea, the idea why, well, at least it already exists abroad, but in Ukraine, it’s so … There is just a couple of girls and then in Kiev. And since it is very ill-considered and not common, I mean, a model agency, where people with disabilities could be a model. I do not mean a model on the podium, although this is also important, it is also necessary. At least a photo model, it’s also desirable to be more popular, and I have come up with the idea that we need to do something with 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 I plan it. All participants, models will probably be with visible disabilities: either in a wheelchair or with a walker, with crutches. The main thing is to see the disability visually. They won’t be just photographed like this is us, but they will take images of world-famous personalities from the history of cinema or literature. Thus, I want to show the society, to look at famous and loved personalities – how 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 a possibility. I want to show the world this kind of personalities. Plus, to help them to believe in themselves and try some interesting, interesting adventure. I hope this will have a social response…

Artem Berman: Yes. The idea, of course, is also super. I can imagine. Really interesting. As I see you do not give boredom to yourself or to others, which, in fact, is correct. 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: We equipped everything by our family in the entrance. We rented, moved to the first floor because the elevators often break down. My parents made a ramp from the balcony single-handedly. Everything was made single-handedly. The only thing I got from social security, if I may say so, is the electric wheelchair. This, 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 security: in the social moment, sometimes the city authorities, well, then they sometimes support me, in realizing my ideas. Something like that. But this is probably not about this question.

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 tremendous difference! Apparently, it will be Mariana Trench.

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

Marianna Smbatyan: Sorry for interruption, I forgot to say. I wrote to you while I worked as an administrator for a fashion designer for the limited time. Should I tell 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, he is genius in modeling clothes, but she does not understand the technical points at all, so she addressed me, knowing that I’m good at computer, she asked, more precisely she suggested me the work of the 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, but it is known that it’s still a minimum of 5-6 stairs even on the first floor…

Artem Berman: Well, yes.

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

Artem Berman: I understood … “Good” people have such character trait. Up to the cemetery fences.

Marianna Smbatyan: Yes, yes, absolutely. And literally … This is the code on the door … I do not know how it happened. Either neighbor, or something, but somehow, in general, they stole. Then we couldn’t get on well… It influenced more not that unavailability, but 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, already giving my time to my moments that were more interesting to me.

Artem Berman: I understood, I mean, which 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 that 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 are time and inspiration, I want to develop myself a bit as a writer, finish the book I write. 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 disability, in the condition that you have?

Marianna Smbatyan: It’s probably all in the aggregate. Of course, I have to overcome myself, but I want to say that I have to overcome myself, not because society does not always react correctly to people like me, to people with disabilities. If the society was more open, if people like me were indistinguishable, yes, in the perception of healthy people, then it is not necessary for yourself to overcome all these moments. I mean social moments are hard. Plus, of course, the physical need to be, the need or necessity, so to speak, always be dependent on the surrounding people. I mean to stick to such an active position is very difficult, even when it is elementary just go out, take a wheelchair – it needs 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 the other people. This is psychologically and physically difficult.

Artem Berman: I get it.

Marianna Smbatyan: And plus, not all, of course, but a lot of difficult moments, the lack of normal ramps also affects.

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

Marianna Smbatyan: First of all, it is an economic reason, of course. As they say, the war is a war, but lunch has to be on time. So I think … Sometimes I have to take some orders that are either uninteresting to me, or I’m tired of them, and I just want to rest, lie on the couch, watch the show. But I understand that this is a job, and it is because of the necessity for financial support, that we have to work, of course, and get down to work, which, well, or orders that are not so interesting, but do not want to do any wrongdoing. 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 somewhere to go, a healthy person just sat in a simple taxi or on a bus and drove off. A person with a disability does not need a simple 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 much money. The situation is even worse with traveling. All these desires have to be kept only in the head. First of all, because of finance. Therefore, yes, I want to earn more to just elementary … Do not go buy a yacht for yourself, but just engage in human life. This requires a lot of money. Well, plus, I will not hide, many people who have big finances still prefer to work, because the necessity to be needed, – this is inherent in one way or another to 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 on the first place.

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

Marianna Smbatyan: Yes, I can imagine. So I have earned so much money, and I think, “ let my work go out of here.” I think I’ll have rest. I’m going to London, Paris, traveling. Then I would leave my work. If we do not speak in comic form. Jokes are jokes, but if I realized that I would have enough funding to afford, again, not always, but don’t work sometimes. Don’t work all the time… I do not know … You should be an amoeba if you always don’t work, don’t do smth. 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. Do not do anything – it’s just degradation. The direct way to degradation. Active people, probably, do not even know how to have 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, in society?

Marianna Smbatyan: Yes, obviously. And many times I said it in an interview with the media when I was asked a question, what is necessary to better perception people with disabilities around the world. What is necessary for that? And I answered everybody, and I will answer now – it’s such a connected concatenation. Of course, I understand, it’s easier abroad concerning the accessibility of roads, etc., yes, maybe in some places it’s more affordable than here. If it were more available for use, people with disabilities could be to go out much easier and without any issues. Therefore, it would be easier for them to find a job.
Consequently, the society, noticing active … Not that if someone sees a person in a wheelchair one time per year: “Aah …” Like an alien. Well, I exaggerate, but they perceive so … a person in a wheelchair … But if they always see such people everywhere – someone was on the bus, someone was going past, someone at the disco. It would be … They wouldn’t differentiate from the healthy people, because they would be here and there. Of course, this is necessary. If people could work normally … This is employment, this is the provision and confidence of a person. I mean work, if a person is employed, he/she does not sit and think: “What could I do, maybe I should glug? 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 wants 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 just made the first, figuratively speaking, steps in active life, my parents were worried, especially my mother. She, “How come that she is not next to me? How come?” If something happens. What if I fall down… What if the car run over me, what if something else happens…. What if maniacs, etc. She worried too much 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, “How? You will fly into pieces etc. It was a bit hard. I was always told: “Are you kidding?!” Sometimes it still happens. “How? You can not! You will not make it! What if something happens to you.” But in general, except 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, healthy person or something like this. Sometimes, here, 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, but unfortunately I cannot afford it, but I just want to have over a barrel, make him/her sit up, bang against a wall, in the order he/she just think about his/her possibilities and… Sometimes it happens that way, what and where is this implementation.

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

Marianna Smbatyan: I believe that … Of course, the paper is good, but, unfortunately, nowadays this is not key. I mean, sometimes they see, oh, a person has a diploma, probably, we should hire him/her. But, in fact, I faced many times with the fact that, again, I always say with pride, I have an incomplete secondary education. I always speak about it everyone, because I want to sum up that the main thing is not this, the main thing is that if a person is moving, studying, a person has a desire to move in the right way in some area, then he/she does not have to enter any university. If he wants to find jobs, then, in principle, this is a necessity, of course, because in some spheres the 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, generally higher education in Ukraine, as in Russia, it is something devolving, 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 have? My understanding is that we can voice a pension. It’s something about $ 100, right?

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

Artem Berman: This is about $ 100. A bit less. That’s it. Accordingly, the exact percentage is not necessary, but it is significant for you, or, let’s say, not so significant – you live with 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 stable monthly salary.

Artem Berman: Project work, it’s clear.

Marianna Smbatyan: Yes. I mean today I can have a 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 do 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 it. Sometimes I am cruel. I want to win always by myself.

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, 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 it was the stage of uncertainty, which I still try to overcome.

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

Marianna Smbatyan: I can do anything if someone believe in me and support me.

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

Marianna Smbatyan: A rock star.

Artem Berman: It’s an option.

Marianna Smbatyan: and the 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, Marianne, 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!