“The important thing is not take on the role of the victim and to live while you are alive.” / Vardine Grigoryan
At the age of ten, after losing her mother, Vardine was forced to fight alone for her rights and convince society that she had the right to live like any other, . Looking back at her childhood, Vardine realizes that she came out as a winner, admitting that she has fulfilled the most ambitious dreams of her childhood, reaching higher heights.
“In reality, there was quite a lot of negativity in my childhood. In Armenia, the attitude towards someone with disabilities is terribly wrong; children are not told how to treat people with disabilities, and this stems from the perception of adults themselves,” says Vardine Grigoryan, 32.
She was born and raised in Vanadzor. In early childhood, the girl was diagnosed with Marfan syndrome, a genetic disorder that she inherited from her mother. Marfan syndrome is a connective tissue disorder which can be manifested in different ways and to a varying extent. Vardine’s mom did not have any visible symptoms of Marfan, that is why her disease and particularly aortic dilation were never identified.
“My mother wanted to have a childvery much, so she got formally married at the age of 34and divorced some three or four months later. When I was born, my parents were already divorced. I know that scandals preceded my birth; they accused my mother for burdening her family with the birth of a child, especially when it turned out that the child was going to have health problems. Despite all this, my mother decided to give birth and keep me.”
Vardine’s mother, Seda, died 22 years ago,but her daughter keeps the memories of her unconditional love and affection alive. Since then, Vardine has been living with her grandmother Varduhi.
“I remember how I used to sit on my mom’s lap even when I was already 10. She loved and cared for me very much. She gave me a unique name — “Vardine” and thought that I was the only Vardine in the world. Unlike my mother, my grandma did not like encouraging. Her general approach is very stereotypical and she looked at me through the prism of society. My grandma was ashamed of my appearance. I remember, when I was still a child, she used to walk very quickly on the street, so that I could never catch up with her. She feared that people would see us together and start asking if I was her granddaughter,” Vardine recalls. “At the same time, she would never let anyone offend or be rude to me. Her protective instinct was an interesting one. She wanted to protect me from the entire world, but couldn’t do it in a way that I wouldn’t perceive it as pressure or an attempt to hide me.”
Unlike many children with disabilities, Vardine was able to receive education at a regular. However, she still remembers the terrible psychological pressure she had to experience during her daily journey to school.
“Working that road to school every day was terrifying, because the kids living in the next street door laughed and threw stones at me… All this grew into such a huge phobia that even now, when passing by that neighborhood, I become alert. I do realize that all this is in the past, but it is still among the worst traumatic experiences of my life.”
Vardine had almost all visible symptoms of Marfan syndrome At the age of 13, she was was diagnosed with spinal curvature.
“I had to undergo three surgeries at the Masis orthopedic hospital, and the post-surgery period was terribly painful. I had to stand during the classes at school. When the pain was particularly unbearable, it was impossible to sit, I had to stand up or walk,” says Vardine who has already undergone six such surgeries.
Despite the society’s stereotypical thinking, negative perceptions and discrimination, Vardine found the key to moving forward: she tried to be as helpful to people as possible.
“I thought that if I failed to do anything useful even one day: my very existence would become meaningless. People would notice that and think that I have taken up someone else’s place. I thought I had to justify my existence.”
Vardine’s love for education helped her overcome the difficulties that she encountered in her life. She acquired good friends at school.
“The love and positive attitude toward me were not an act of pity, but were rather based on respect. There was a general opinion at school that I was very smart, so everyone was really kind to me there. I went to school when I was only five, and they say that I used to ask my mother to take me to school even earlier. I woke up every morning and started reading my fairy tale books. They say I learned to read before actually going to school. I wanted to be an honor roll student. I always had to work better and harder, I could not afford an average performance,” she recalls with a smile.
After finishing school, Vardine entered the Vanadzor Technological College and since she could not afford a private tutor to prepare for entrance exams, she started learning English on her own and was admitted to the Vanadzor State Pedagogical Institute, Department of Foreign Languages.
Her hard work and eagerness for knowledge helped her realize her dream and travel to the US as an exchange student. In 2005, she entered Williams College in Massachusetts and became a one-year non-degree student at the Sociology Department.
“My grandma, of course, always opposed my plans related to studying and thought very poorly of all my initiatives concerning education. She was raised in a society where children with disabilities were hidden away or given up. While there were never been any doubts about keeping me, she never believed that society’s attitude toward me would good. she thought learning was a waste of time for me, because no one was going to hire me anyway. Her approach was so surprising; no one I knew had achieved as much as I did. But still, she did not accept that and just wanted me to stay at home, doing nothing, she was always afraid that someone would offend me. Once, years ago, I was hanging out with some friends of mine who were dating. When they left, she said she didn’t want them to visit as again. I asked why and she said I don’t want to you to see them and suffer that you won’t anyone to love in your life.” says Vardine.
But realizing herself and getting good education were what she found important.Despite all this, due to her hard work, persistence and extreme willpower, Vardine managed to finish studying in the US, then returned to Armenia and worked at Capacity and Development for Civil Society NGO for a year.
“The time spent in America was the most peaceful period of my life. Even when I just walked on the streets, I felt like my spine was straighter. I forgot about my health problems. The social perception and the general approach of people show you that you are an ordinary human being. But here, people pay a lot of attention to your physical appearance and that constantly reminds you about your disabilities and that you fail to fit in the frames set by society,” says Vardine.
In 2009, she applied for a graduate program and traveled to the US for two years to study Public Administration at the Ohio University, .
“I’ve had a very interesting and active student life in Ohio.”
“When I came back to Armenia, I worked at Helsinki Citizens’ Assembly — Vanadzor as a translator for a short period.
Then I became office manager, worked on institutional development programs and finally became Democracy Monitoring and Reporting Coordinator. I’ve been part of the Helsinki Citizens’ Assembly for six years already,” says Vardine with a happy smile.
Vardine is devoted to her work, but she admits that her happiness would be incomplete without her caring and good friends.
People with disabilities often try to embrace the situation, they almost perceive it as a punishment they deserved. But Vardine decided for herself that if you cannot put up with something you have to change it or at least try. She decided to replace the dreams and prayers for a miraculous decrease of scoliosis with more practical actions. Two years ago Vardine met with Karapet Momjyan, the head of spinal services at Erebuni Hospital and was able to convince him that she could survive a most difficult surgery at the age of 30. Within a few weeks Vardine was able to borrow the money she need for the surgery. The surgery went better than expected and another one followed as well.
Spinal curvature and other health issues have not fully disappeared but Vardine is convinced that this experience helped get back her strength to fight. Within two years Vardine was able to return all the money she had borrowed and she gave the money that was donated to her to those who were in need of it.
Lara Aharonian, director of Women’s Resource Center, describes Vardine as someone with a strong personality and a role model for many. She also underlines Vardine’s unparalleled sense of humor that she never loses even in worst moments.
“Vardine is a positive thinker and is always full of hope. I was amazed at that open-minded and resilient girl and thought how brave she was to get through so many difficulties and continuously work on herself to achieve her aspirations, in spite of all the challenges and obstacles encountered at workplace and in her life,” says Lara Aharonian.
Vardine in turn, says whatever she does in her life, she keeps her mother in mind.
“I don’t know, whether subconsciously or consciously, but it turned out that my life is what my mother wished for but was unable to accomplish in her life. The greatest compliment I receive is when somebody calls me Seda by mistake. That’s when I know that everything is right.”
Vardine is convinced that everyone decides for themselves how to live their life , no matter what advice others give.
“The important thing is to not take on the role of the victim and to live while you are alive.”