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International Federation for Spina Bifida and Hydrocephalus
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Being pregnant of a child with Spina Bifida and Hydrocephalus

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Mothers and fathers with Spina Bifida and Hydrocephalus



Living with Spina Bifida or Hydrocephalus: portraits

Guro Fjellanger, Norway
My name is Guro Fjellanger and I am 38 years of age. I was born on the west coast of Norway in the city of Bergen, but was brought up in Stokmarknes in the nothern part of the country. I am the oldest of three sisters, and the only one afflicted by spina bifida.
I went to an ordinary kindergarten and school and recieved no special teaching, although I spent at least one month in Oslo every year through primary school in order to undergo various forms of surgery. My medical journal from this time says ; "Guro is an intelligent child with a great imagination and an ugly walk..!". During my childhood I participated in different forms of activities such as gymnastics and playing the clarinet in the schools orchestra. Of course I was not able to do all the same jumping and running as other children. But I was among the best at throwing two or three balls against a wall for a very long time...
My parents chose not to have a car, which was possible because I grew up in what was then a village . This forced me to walk, use my tri-cycle during summer or chair sledge during winter. My parents raised me as similarly as possible to "a normal" child togehter with my two sisters. This gave me a strong belief in being just as valuable as any other human despite my disability.
I have always been interested in politics, especially issues related to the environment, racial equality, gender and questions of disability. I moved to the southern part of Norway, to the capital Oslo, when I was 19 to become a silversmith. At the same time I started my engagement in politics by joining the board of the youth party of Venstre (The Social Liberal Party of Norway). Since then I have been into politics on different levels, and became Norway's Minister of Environmetal Protection in 1997, a post I held until March 2000.
Travellling to different conferences and negotiations as a Norwegian minister on cruches, I was very often met with the question: " Did you have a ski-accident?". They were always smiling, but when I replied "No, I was born like this" the smile usually would disappear and they would say: " I´m sorry". I think this story underlines the bigges challenge we as people afflicted with disabilities face today. Even though I was the same person, and the chruches were the same, their wiew of me would suddenly change, when they got to know that I was born with SB and had not just broken my foot.
Today I run my own company giving lectures on environmental issues, and I also run courses teaching people from organisations and interest groups how to get through to decision makers. Not least, however; I give lectures on how the care system and society around us should be more adapted to our individual needs and made more accessible for us. I live with my spouse and my cat in my own flat in Oslo. I spend my spare time to see friends, read, listen to music, go to movies, theater and concerts. Also I have traveled a lot, not least in south eastern parts of Africa. Today I have learned to ask for help, and I have even got my own wheel chair to cover distances longer than I am able to walk. I live a good life, with its ups and downs as other people.

Olga De Wit, The Netherlands
I am Olga de Wit, a Dutch girl living in Amsterdam, The Netherlands. Twenty-four years of age. I enjoy sharing my life with my boyfriend, family and friends, finished my psychology degree at the University of Maastricht, and at this point in my life I’m wrestling, with a lot of fun, through my first year of medical study. As you can see, I’m just an ordinary girl. Still, I feel special as well.
I was born with spina bifida. Like most spina’s, I have my bad and good periods mostly depending on my health and environment. During my childhood I didn’t realize so much that I was ‘different’. Of course, I could not always participate in all activities, but had a great mother who made up for the moments that I wished I was ‘normal’ like all my other classmates, in doing other nice things with me.
When I started to live on my own, when I was 19 years, the confrontation with my limitations became bigger. My mother wasn’t around anymore to ‘clean up’ after me, and arrange my appointment with doctors (e.g.). Finding out how to get the aid you need isn’t that simple because the health-system is not always helpful, clear, and takes it time. Still, I also found out that most people have a story certainly not less than my own, which makes you realize that life isn’t perfect. As I see it, it’s one big challenge.
Despite the fact that everybody has his problems, I still like to be around people with spina just because they understand and fill in the gaps without saying a word. This makes you feel so normal, and gives you the feeling of being part of a whole.

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