6 Stories about Growing up of Women with Disabilities in Serbia

Posted on by Marijana Čanak

Respecting The International Day of Girls, we asked women with disabilities about their experiences of growing up and memories of themselves as girls. What do they remember first? How did they imagine themselves as grown-ups? What did they dream about, were fearful of? What hurt and what amused most? What did they need but didn’t have? What they had in abundance and didn’t need? What would they be like if they had grown up in another time, in a different place? How often do they find that girl in themselves today? What is the look on her face? How do they cherish her? What talents and features does she keep? What would present-day women tell the girl? Following are their stories, stories of the girls growing up in Serbia, in the last three decades of the past century and in the term of the century. They are open, rebellious, curious, eager for challenges, courageous, and fearless.

Demons under the Bed in the Nursery

Aleksandra D. Tomasevic, Pancevo

I remember little Aleksandra with melancholy and an understanding smile. Insecure and clumsy walk, bruised knees and elbows, cracked chin from falling. It is a girl that has never learned to ride a bicycle.

She stayed at home when her buddies went for a ride, or she was watching them playing through the window of her daddy’s car while she spent her time in therapies in exercise rooms.

The girl dreamt she was singing, going to music school, and performing, but at the same time wondered how she would climb the stairs when they had high steps.

She realized her difference most at PE classes. She was always slower, less skilled. She felt angry and tried to understand the feeling she experienced each time in other children’s company. Then once, during the walk with mother and father, she said: I do not belong anywhere.

Insecurity and non-belonging. These are the demons hiding under Aleksandra’s bed in the nursery. She did not know how people saw her, but she regarded herself as less worthy. Fortunately, pure children’s hearts did not agree with her. Her schoolmates walked home with her after school, carried her schoolbag, and helped her when she tripped and fell over. Parents behaved in a way that she did not feel overprotected, with no apprehension or fear. They taught her she could do everything on her own, like other children, until she started adopting it as a truth.

I wish that girl were freer and more relaxed as a young girl, a teenager later and in her twenties. I wish she had taken deeper breaths, and she wasn’t afraid of each of her mistakes and dreaded any new acquaintances and relationships, thinking they would reject her. If I had a chance, I would tell her she was much stronger and more competent than she had believed. That everything would fall in its place, that she would have her moment. That she was not late for a thing, that she would find her way and people willing to stay no matter what happened. I would thank her for not losing her honesty, kindness, and the capability to accept people as she wanted to be – without holding back, without prejudice and fear while growing up.

I would whisper to her to accept herself in the same manner because tiredness is all right. It is all right to need more time for certain things moreover it is all right to have your own, other, different way of functioning, walking, running. Bruising your knees is not a shame. To be a coward, hide, look for excuses, feel self-pity – that is a shame.

Eager for challenges, broadness, and space

Milesa Milinkovic, Uzice / Novi Sad

I was 4-5 years old when we moved to the apartment. Nana looked after me for a while (my mother’s mum, I never called her Granny, not even when she was 88 and I 35). We had a two-seater sofa with metal legs. I hid under it on one occasion while she was at the neighbors for a cup of coffee. Although she bent down while looking for me, she couldn’t see me because I crawled all the way to the wall. She thought that I fell from the sixth floor or walked out to the street (never minding the fact I couldn’t walk at the time). She wailed at the top of her voice. I really don’t understand how I didn’t get some spanking for traumatizing her. It’s not that I endorse spanking, but back then, slapping on the bottom used to be the principal pedagogical method. Hence, not only did I not get punished, but my father wrote a poem about it.

I remember holding the rest of the same two-seater sofa and doing a hundred squats under the watch of my father, who says, out of nowhere (at least it looked like that to me): Wrong! Ten more squats for punishment. I remember the tears and anger. I recall his sentence that is the most cited one in my pieces of training about disabilities I will later learn: – You have to exercise because when you go across the square alone and fall, you have to get up by yourself. Him saying when, and not if, is one of the whiesI am where I am today.

One of the earliest memories is of myself sitting on the floor and playing with a four- colored pen. I was fascinated by the fact that there are four of them in one! How does it work? Sometime later, I imagined myself as a head of an office in a dress from the XIX century (smiley that covers her eyes bashfully because of no connection whatsoever). The cut of those dresses is in such a way that they cover the legs. I did not come to terms with my disability when I realized the way I walk isn’t – typical.

I dreaded exercises, especially so-called apple picking. I dreaded going to Banjica hospital and staying there for months. When I was a frosh at the university, I went by the Banjica hospital for a checkup, even without a referral from my doctor, with a friend. The feeling in my guts did not change, not after twenty years. When we entered the hospital building, I was on the verge of tears. What made me happy was Fructal’s strawberry juice (grape, strawberry, apple) that my father brought in after work. I will long for space forever. I grew up in eighteen square meters. Later my sister was born. It might be the reason, that now when I have my own forty square meters, I unwillingly leave the house.

I often think that, among other things, growing up in a small city, in a tiny apartment, in a family where there was violence from my father shaped me into the woman I am today, made me hungry for challenges, broadness, space. If I had been born earlier, I would have stayed confined within four walls. Or if I had been born into another family, since the environment pressured my parents to put me into a nursing home, but my father couldn’t imagine it because he used to be an orphan growing up in an orphanage. If I had been born later, life might have been easier for me, but then I might not have built up some warrior qualities.

There is one being that makes me smile when looking at me and saying I am sweet and beautiful. Then I realize that I am smiling just like a little girl from some of the photographs. I envisage that basically, I am a happy and unconditionally loved little girl. I am still the girl full of curiosity and fascinated by the world, one that wants to discover how something is functioning (and how things are done).

The message to myself is: – You cannot imagine what a dragon lady you would be, very, very strong, clever, and loved. You will do such great things in life.

P.S. You are beautiful – you do not need dresses that hide your legs.

Proud of the Inner Rebel

Jovana Djukic, Negotin

You are eight years old, in the first grade. You ought to be second but, for an obvious reason, you started a year late. You cannot be with your classmates the teacher comes to your house to tutor you. You cannot walk. Your parents do not consider it a problem – they support you, believe in you. The teacher is not friendly. She is too loud and demanding. She will have offended you by telling you that you would never get where everyone else, that you would never succeed, that you were too slow.

It used to be hard until parents managed to get a new teacher. Afterwards, everything falls into place- you are good at school, you get to the fifth grade. You are afraid of how they will treat you there. You are having a hard time noticing everyone is looking at you. They are looking but not approaching. You feel less valuable, they are two meters far, and they do not want to include you in their circle. You cried a lot but promised yourself to do your best. You find it awful, them looking at you with pity. You live in a small provincial area: too many stereotypes, too little understanding.

You are doing your best to prove yourself: I suppose to yourself mostly. Still, you are not alone – your teachers, parents, and your brother support you. You would be alone, have doubts, wondering what will happen next. You enroll in secondary school, and your classmates accept you better. You would have a few friends to back you. Some teachers are full of prejudice, but you are rebellious, in the age when you think you can do everything. I am so proud of your rebel from that period. You will be very upset because your older friends, wheelchair users, keep telling you that you will never be truly excepted, that you are different, nobody wants you. Nobody will tell you that you cannot – no matter they are older, you are an idealist, you will change it.

Congratulations, you graduated from high school! Great success – what’s next? You prepared the entrance exam for the university with backing from your parents. Now at this point, before entering the university, I would like to stop. I know, I know you are worried sick- what if you fail? I should have had more faith in you at certain moments – I am sorry. Now I tell you – it will be all right, trust me, I know that you are afraid, I know now that you can do it. Welcome to the best of times! Stressful in the beginning, wasn’t it? New environment, you are frightened, you want to give up, but your family is there to help. Be patient; we need patience all the time; patient with yourself. You will meet beautiful colleagues that will make your life better. You will do it on your own too. Social work will broaden your views and self-confidence. They accepted you; most importantly, you did too.

What’s left, Jovana – is to say goodbye and to tell you that no matter how difficult things are at the moment, you will be all right. When you are eight, the story about the university and acceptance seems unreal, still – it is what you want. You want to contribute, to help, to feel accepted and loved because you deserve it with your hard work and qualities, not out of pity. Being 23 years old, I know that you from the past would have been proud of the future me. You fulfilled all your wishes, and hopefully, you will continue to. You will love social work and colleagues from the faculty. Hopefully, your writing for the Disability Portal will reach the girls and convey a message: – You can do it, because you are ready to make an effort, and I know it is hard. This grown-up likes you as a girl, be brave!

Courage is not the Absence of Fear but the Action Despite it

Olivera Ilkic, Belgrade

When I think of myself as a little girl, the first thing that is on my mind is my family: mother, Grandpa, and Granma, aunt, sister, cousins that loved me, the support they were giving me without which I most certainly wouldn’t be the woman I am today. I remember the operations, physical pain, fear, parting from my family, the feeling that I do not decide about a thing going on, that I have to be strong and brave because of the people that love me. I remember primary school, children with different disabilities with whom I shared a lot of beautiful moments. I also faced the fact that a person who is discriminated against could also discriminate against others. When you have cerebral palsy, as I do, you live with a complex condition often connected to difficulties with cognitive development, which may or may not happen in each case. I had none but still faced constant disbelief and doubt in my intellectual capabilities, more from health and education workers than from other children. The children were often told not to socialize with me, which made me feel less valuable, rejected as if I didn’t belong anywhere. Those like me found it hard to accept me as well as those without disabilities. Fortunately, I developed a defense mechanism very early, learned not to show when I am hurt or in pain, developed a distinctive sense of humor that I have today. It helped me to get to know a few people that think out of the box, quite enough to make friends.

When I was a little girl, I imagined myself as an independent, brave, and strong young woman than couldn’t get hurt easily. I imagined: having a successful carrier, that I am a psychologist traveling a lot, providing support for people in need, living on my own somewhere by the sea, and being surrounded by cool friends. That people think I am the best aunt in the world. I dreamt of finishing university, having a profession that I love, and providing for myself. I dreamt of people not associating my name with a disability but with: she is excellent in what she does, a true friend, a woman that loves people and has integrity!

I was happy when someone talking to me thought they could have some hope, that with a lot of effort, it was possible to change one’s life. I was happy to make someone laugh out loud. I was delighted each time waves took me away from the shore. And when I realized that I did not gain weight although I had eaten a 100gr of chocolate the day before!

The thing that hurt the most was that the society I was living in made it clear, immediately after primary school, that it is evaluating me only through my physical in(capabilities), perceiving me as a burden, as someone in whose intellectual, emotional, and psychosocial development shouldn’t be invested in, someone they are not counting on in any case. I needed a personal assistance service. I needed support for not having doubts about myself or things I could do, to hear that I am not the problem but the ones contemplating me as such.

I needed the society and the country in which I live to see the potential that my family did in me, to support me to overcome physical obstacles that hindered my daily functioning. I needed help to overcome the prejudices of people who were so afraid of my dissimilarity that couldn’t see anything past it. 

I got no support from this state: everything I achieved I could be grateful for only to my family, and perhaps myself mostly – my persistence, readiness to learn, do my best, and take any opportunity, never mind how small it was. 

I carry all these with me today as well. I choose then, I choose today, to recognize and cultivate primarily love, empathy, and solidarity in people around me. I am ready to take a risk, stand up for anyone endangered in any way, led by a motto: – Courage is not the absence of fear but the action despite it.

To the onetime girl in me, I would tell her to trust herself and have faith in herself. The road she would take would be full of challenges. I would say there’d be tears, but they are not weakness; they are the remedy. I would say that our dreams haven’t come through as we wished, but I haven’t given up – there are so many ways to change reality and accomplish one’s dreams. I’d love her to know that I am proud of both of us, to tell her not to worry, we will be all right, there will be a lot of laughter, love, and good people for the two of us. 

Don’t Forget to Play

Jelena Rasic, Novi Sad

I could never understand until what age is a person a little girl, or one is allowed to be a little girl? I am 31 years old. It took me thirty years to realize I am still a little girl, although I am now a young woman, an employee, a sportswoman, a friend, a lover. As a matter of fact, that it is absolutely fine to do, feel and be whatever I want at any stage of my life.

Thinking back about my childhood, myself as a little girl, the first thing to spring into mind is inexpressible happiness because of the fact that a child doesn’t regard things as grown-ups do. I believe that a person should only remember nice things in life. From today’s point of view, my childhood was unusual because I was born without a left forearm, but it was nice nevertheless. My mother, bewildered by the situation, let her child do almost everything herself and be as she is. She let me research, skip lunch from time to time, to knead the dough, although I got all dirty. It might be the reason that today I make great rolls and bread. I could climb trees and used to have bruised knees all the time. Flea allergy vanished, I was a child covered in spots from them. I used to leave my clothes at the front door to stop the fleas from entering the flat. My body developed an immunity so I can enjoy myself with my dog today. Mother never told me off for not being able to do something – she knew I would succeed. At least I thought she had known – now I think she could simply have faith. That is sufficient enough. She did not tell me off for not being a typical girl in a pink skirt playing with Barbie dolls. My toys were marbles and balls. In fact, toys were any stuff I felt like playing with. Mother says, even today, that she is not worried about me in the least because she knows I will manage. She did me a favor for being seemingly uninterested. Now I understand why she used to be like that, but growing up, I did want someone to put on my sneakers from time to time or to teach me to tie the shoelaces. I had to do everything on my own. In my opinion, each parent should consider allowing their children to be what they want. They don’t have to go to extremes as my mum did in some situations, but it doesn’t have to be as parents think, because a child knows stuff, sometimes even better than the parents.

I didn’t understand some things on occasion. I loved shows about animals and used to cry when a leopard overtook and caught a gazelle. I do not cry anymore, but my heart still roots for a gazelle, although I know that another one, not filmed by the camera, will be caught and killed by a leopard. Now I know that is how nature works. I still do not understand why some people are evil and feel the need to hurt, humiliate, and cause pain, especially innocent to ones. I always felt sorry for the abandoned animals, specifically cats and dogs: I felt bad for not helping and rescuing all of them. I am still sorry for that today. The little girl in me can’t understand that. Over and over, I look for explanations and justifications for each human because I believe that every person is good by nature.

At some point in my life, I forgot about a brave and fearless little girl. I suppose I thought it was normal the society teaches you it is. One gets frightened of a so-called big life, school, university, vocation. You think that the elderly people know better. I would like to tell every girl or a boy, every child, that grown-ups don’t have a clue; in particular, the ones that have left their inner child in the corner of their heart and forgotten about it. I would love to tell them it is all right to be a child, no matter how old you are. And that there is no big or small life. Life is always big. Never forget to play and enjoy life. Children laugh sincerely; children try a million times before they succeed; children pick up their friend if he falls; children love the feeling of being safely tucked under a thick quilt while it is snowing outside and the smell of warm milk in the morning. Grown-ups forget these things. The most important thing: you can really do everything. Now, when I am an adult, I understand that I cannot help every animal, but I can help at least one; maybe I didn’t save the whole world, but at least I saved someone’s world. Someone else would see it and look up to you. It is worth it. Adults don’t think it is. Children know that everything counts, even an attempt. The attempt counts the most since you need courage for it. How much courage is required, when you persistently try over and over, until one is successful. It has to be successful. Children know that secret.

I am 31 years old. I wish to read this text when I am 41, hopefully, a mother; when I am 51 and write books; when I am 61 and drink cocktails on some beach. Who knows what other roles I will play in life. One thing I never want to stop is being a girl.

Master the Darkness 

Marija Vrebalov Djordjevic, Novi Sad

– There is noise in the bathroom – I’ll go and check what it is. – said mum to my father in the middle of the night. 

– May, dear, it is you – why didn’t you wake me up? – whispered mum in a soft low voice. 

– Go to sleep mum I can do it by myself. 

It is a story my mother and father retell about me as a nearly three-year-old. I often remember it because it is my character to do everything I can by myself. It is more complicated nowadays because there are many things I cannot do myself. When these limitations frustrate me most, I think of a little girl that mastered the darkness, using a bedpan, clearing up, and returning to bed so young. Mum stayed by me but let me go on with my doings. I hadn’t known if I could, but I tried intuitively. I had no idea what things I could reach, how would I turn on the lights, clean the potty or turn on the tap and wash my hands. I succeeded in everything in my way. Even if I hadn’t, it was not a big deal. Even today, I am learning from that little girl Maya, who worked on her independence from a very young age without burdening others. 

I dreaded losing my mother. I had intense dreams, which I retold her, most often about separation of a kind. It happened when I was fifteen. She died. That loss, that numbness of a soul from irrevocable partition, that part of me cries even today as if it hadn’t understood even after all these years what had happened and why. I see her in the street sometimes; feel the smell of her skin and hair while we are hugging; hear her voice. The little Mayuska never let any memory fade, no occurrence disappears. For a long time, I was the happiest when I was at home alone and crawled into her cupboard to smell her clothes with my eyes shut. I had to imagine it. I cried, thinking of us doing things together, laughing. I didn’t have prepared lunches, washed and ironed clothes, clean rooms. I had to do everything by myself. I had no one to talk to, confide. A month after her death, my father was in a severe traffic accident. He was in a coma, and they told us he would not survive. It was February 19, 1988. Winter. House empty and cold. Death was all around me. I used to get up at five, iron my school uniform, go to the hospital to see my father in intensive care, hear the news if there were any and get to school on time at seven. I dreaded the new day, was afraid of the night. I was scared of the sound of the phone ringing, so I started unplugging it. The house was quiet, cold, and empty. Within a month, everything vanished. Childhood, family, happiness, safety, laughter, love, support. Voices disappeared, sounds of life, and the purpose I thought I had. Everything I had, everything I thought belonged to me, vanished. My mother disappeared, and now my father was disappearing too. I grew up. I closed up into the deepest self. I didn’t laugh for a long time. I wasn’t happy about a thing for a long time – my heart froze, my mind looked for answers, the solitude was unbearable, socializing with friends was impossible. I endured the horror of forced loneliness, perceived my mothers’ death as abandoning. I watched my friends fighting with their parents, saying bad things about them, getting furious because they don’t have it their way, and started finding my inner peace.

The little girl in me cherishes her intuitive mind, thanks to which when she was very young asked to spend as much time possible with her mother. That little girl was loved, cared for, supported, taught to be hardworking, to honor the elderly, to study, train. Daddy survived, woke up from the coma, my prayers were granted. I learned incredible stuff from him. I don’t know how things would have evolved if my mother hadn’t passed so early, I can only guess, but I think it doesn’t matter. The girl knew how to survive the indescribable sorrow, knew how to find peace in the hormonal madness during puberty, knew how to stay healthy, and to see something good in any moment of her life. That goodness was a seed for that day’s happiness. It is a talent or wisdom I’ve been nurturing for years – to rely on my strengths, to have trust in myself when it is chaos, panic, an unbearable situation caused by an unpleasant emotion or happening. To pull myself together, calm down and think of all the experiences I have, and contemplate.

The girl is a pixie, endlessly curious, full of energy, and fearless, but with the profound awareness of temporariness. She knows that everything around her is precious. She knows life is magnificent. She reminds me that love doesn’t disappear when someone dies and that one can love in absence. Although people ask for constant proof of being loved, the love we have for others is much more joyful and meaningful. She taught me when there was nobody to love her, to love herself and the life she was given. She is I – a little older now, but essentially everything is the same. I simply understand and accept things as they come much easier and quicker.

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