This is a working title of a story I’ve been working on for about a year. Back then I was doing a story on dog assisted therapy and I met an eleven-year old girl with severe cerebral palsy. Her name is Barbara and something about her just seemed different than with other people so heavily handicapped. She is severely spasmic, her body just convulses all the time, she can’t speak, she can’t even sit up straight, her arms keep flying around, her head wobbles most of the time. But from the very beginning I had a feeling that intelectually and emotionally she is quite normal. Which was scary imagining being fully aware and caught in such a body. When they asked me if would do a story about her, I agreed, but to be honest, it was on a hunch. I knew she was special, I just could figure out how. But the amazing effect of dog assisted therapy was enough to make an amazing story alone. So that’s how my friendship with Barbara started.
I lost count of how many times I’ve visited her in the rehabilitation center in Dornava since then. But sometime early in the story, when I needed to do research on how special she is, they told me her story and I’ve been hooked ever since. Immediately I got the urge to tell the world about Barbara and how special she is, not only because she’s one of few, but because this girl inside such an unresponsive, out-of-control body, radiates so much happiness and life energy.
Barbara is probably the happiest girl I’ve ever met, smiling all the time, joking … She’s extremely kind, communicative, social, friendly. Everybody loves her, play with her even in brief few seconds when they meet her in the hallway… And she loves them. She grows on you, creeps in to your heart, because she brings a message. Most of the time when I was driving home from Dornava, I was left competely numb. Overwhelmed in thought, staring in front of me, just trying to come to grips with her condition and her immeasurable happiness and kindness. And at the same time comprehend the fact that she’s smart and practically normal psychologically, but caught in that body. Knowing that, I couldn’t help thinking about her future and with all that positivism came sadness. And with the mixture of both came an enourmous wish to let the world know and provide support for the future.
Barbara is special, because despite severe cerebral palsy that heavily affects the brain as well, she’s smart, communicative, social and not that different from healthy girls her age. But her condition doesn’t allow much of that to show, because she can’t control her body. She can’t write things down or show them with her hands, and of course she can’t speak. Which is why the girl inside found a way to bypass her body. And this is even more rare and special. She communicates with her eyes, the looks, a bit of mimics. When she needs to show anything, she looks at it. And she’s so good at it, that she easily qualified for a communicator that she can control with her eyes.
If someone told me before I’d be able to normally communicate with Barbara, I wouldn’t really be so sure. But after a visit or two, I knew everything she was trying to tell me. I knew when she wanted to give me her vegetables at lunch, because I told her before that I don’t like them. She didn’t either so she had to give it to someone. And of course I was the perfect candidate. Very funny. She was laughing of course when she suggested it. And that was just one of many funny moments. You know the clay pendant I wear on my camera strap? She gave me that.
I followed her life in Dornava, her therapies, activities, lunch time, brushing teeth, after lunch siesta … Their gatherings with other users of different communicator (that was really fun).
In fact, she’s so smart that she even goes to a regular elementary school in Dornava. She joins first graders twice a week and they’ve accepted her as one of their own schoolmates. They talk to her very much the same way everybody does. Through signs and reading her eye movement and slight mimics.
She comes from a big family. She has two brothers and three sisters. Her father works most of the day for a very low wage. Physical work, despite having serious health problems. But since her mother lost her job, someone has to earn money. They live in a farm on the border with Croatia… And they used to have cows and all, like a farm should, but with the country falling to pices and money flowing to personal pockets of the scum in high positions, the little people are left with almost nothing. They had to sell the cattle, they only have a small corn field now. But the house needs work. It lacks insulation, humidity inside is a big problem, creating moss and well, you know what humidity does to furniture – and health. Barbara comes home during holidays. She’s home for Christmas, New Year’s, Easter, summer holidays… And this is where she’s most happy of course. They love her, they play with her… They don’t use the wheelchair much. On the one hand, because living quarters are on the first floor and only narrow wooden staircase without a railing leads up there, so they have to carry her, but also because she feels great if her brothers and sisters are carrying her around in their arms. It seems that she’s a lot calmer when they hold her. And this struck me the most. A girl with so much life in her, and her family having so much perseverance, so much love despite all the problems. All that hardship and one very strong link. This little girl and her love of life.
Needless to say, my wishes grew as I got to know her life better. I was hoping for a step further than just letting the world outside Dornava know. I want to help them fix the house now. So that Barbara can come into a home where living conditions would closely match the love that lives there. I don’t know how I’ll do it. How we’ll do it, I have good friends helping me on this matter. But let’s just finish the story (we’re a few shots and interviews away) and see what we can do. The story (in colour) is already published in the November issue of National Geographic Junior. What follows are exhibitions and a multimedia and a campaign, a plan to start some sort of an action to find those who care to help in any way. I can only do so much. I don’t have much myself and the costs of this will be much higher than what I’ll ever get back in money, but I already got back much more, thanks to that girl inside.
Barbara spends most of her time in Dornava where her defectologist takes good care of her and spends most of her time with her. They spend a lot of time in the classroom, but also leisure time, coffee breaks , cooking brakes, ice cream brakes … It’s quite a warm domestic and friendly atmosphere.
In June, Barbara received her communicator. It is a portable device that is attached to her wheelchair, a computer monitor with cameras beaneth. Those cameras record the movement and the exact aim of her look. Wherever she looks, that’s where the pointer will be, just like with a normal computer mouse. When she stops for a few seconds at a certain point, that will be a click. It’s not an easy task . Her speech therapists tried it and it’s tiring. But Barbara aced it. The communicator has opened up an entire world to her. It contains folders of practically everything a person needs to communicate, and more can be added. The existing and new ones can be adjusted specifically for the user, photos of family members added, words or phrases that she knows, or things that she likes added… The sky’s the limit. By clicking on a symbol with a certain sentence or word, the communicator speaks instead of her. It just released the girl inside at least partially from the grips of her condition. She can read books, watch photo albums, go on the internet, write emails, listen to music … She can type her own words and a computer generated voice will pronounce the word she wrote down. The possibilities are almost endless.
I will produce a multimedia in the coming months, that extra effort to make her story heard for her and her family’s benefit. And hopefully, I, we will make a difference.