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Crossing Borders - Opening Speech


Back in 1988,I booked a reasonably priced airfare to sunny Ceausescu’s Rumania, for my entire family.

The military force we saw at the airport made it very clear to all of us that we were entering a different world. We crossed the border. Liesje, my daughter with Spina Bifida, was 10 years old at the time
and we were proud that we were able to fly to such a country with her.

It became a real beach vacation during which we could satisfy all our Western wishes. Everything was possible as long as we played the typical “tourist on the beach” role. We were not allowed to contact the locals. They had created a tiny piece of Western Europe on the beach and we were not allowed to experience reality on the other side of the fence.
More than 50 years of the Iron Curtain gave us an incorrect picture of the Eastern block countries;
the image of a strong and dangerous nation, a tiger, a roaring lion, but we did not know what was happening on the other side of the Wall.

We could have known. People lived behind the iron curtain. Normal people like you and me;
mothers with children, couples in love, workers, doctors, musicians and artists.

Crossing Borders has nothing to do with the tourist industry where you buy a ticket to the Dominican Republic in order to enjoy a Western style vacation on the beach, as we did in Rumania. Crossing Borders here in Oslo, is about international meetings brought about by a common factor,  Spina Bifida and Hydrocephalus.

When we meet, there is immediately a feeling of equality and dignity. We enhance what we have in common by sharing a problem. This creates a situation where we really listen to each other, are interested in each another and are prepared to learn.

Borders between religions, left and right, poor and rich, North and South, East and West disappear. The cultural differences become an added value because the contact starts from something which binds us
and not from something which separates us.

A mother of a child with Spina Bifida in Rumania has more in common with a mother in Oslo
than any ways in which they differ. Their fight for their children with disabilities confronts them with the most fundamental values in life. That’s what they have in common.

This is also the experience we had in IF when we first went to Africa 10 years ago.The IF projects in the developing countries would not have been possible without our friends from the Norwegian Association.
It is not just a coincidence that they have chosen Crossing Borders as the theme for their Congress. The Norwegian parents did not go to Africa to push the overactive Western Health system down the throats of African parents. No, they went to Africa to listen about the needs and wants. They shared their results and learned from each other.  They facilitated parent meetings, and people who have Spina Bifida were actively involved in the process.  A nice added benefit of these projects also has been that the North has learned from the South. The treatment of hydrocephalus and continence management are of the highest quality and locally achievable.
Our Norwegian friends crossed the border in the positive sense of the word. Our hosts are proud of their results and they have done everything to make it possible to welcome our African guests in Oslo.
IF uses the same philosophy in Europe and helped by the EU, IF expands its activities to the Eastern European countries.
More and more Latin American and African countries are joining the IF network. We also welcome the important input of the SBAA in the United States of America.

You see, these are all borders we are crossing! We would like this Congress to be a meeting place where we can learn from each other. On Sunday, adults with Spina Bifida have organized their own workshop to see what they can achieve within IF internationally. Many of the adults already know each other through e-mail or chat groups.

This once again proves that Internet is a public space without borders, Everybody can use it to look for new contacts throughout the world.

That is not all. Internet offers a lot more opportunities. The IF network possesses a wealth of information, which we would like to make available to all of our members. The IF Knowledge Centre will be a storeroom where people can retrieve information, ask questions or leave ideas and information for others.

An IF working group, together with IT experts, worked on this concept. We soon have a trial version and strategy to continue this project in the coming years. This way IF grows into a young and modern Federation. This year IF is 25 years young.

Crossing Borders is also about our own limits.

To be locked up in a dull and pre-pre-planned sort of life probably looks like the Rumanian sand castle on the beach. Borders which were determined by your environment, culture, upbringing and impairment and which you never question.

When you have a severe impairment those borders are much clearer and visible. You are liable to encounter those borders and limitations much quicker. Many people with Spina Bifida have been able to move or even overcome or get round those borders and limitations. Sometimes they have achieved small but also big victories.  Even the simplest things can become challenges for people with disabilities.
Modern science an research are also constantly shifting borders so offering new opportunities. For instance the treatment of Hydrocephalus without shunting is one of them. Another is the progress in effective continence management without useless surgery.

Crossing borders can also go wrong. Guarding these borders is very important. If now we have a tendency to overtake ourselves. We want more than we can handle.  Being limited forces you to choose. You go for what you really want, the essence of the matter. Crossing borders can also mean that you know where the limit is and deal with it appropriately.

Be able to say no if something is impossible. Inclusion is not an objective in itself if it means that you will suffer as a result. Inclusion is a great result and built up out of many individual factors. Inclusion is what we would like to see.

Sometimes the borders are not of our own making. They are the results of a malfunctioning society. In that case Crossing borders means to fight the world around us. If people cross our borders unsolicited, these borders should be redefined. Borders can also become somewhat obscure and you let things happen you really do not want.

For instance, the right to decide about your own money, your own health and body.
In science, something new is not always an improvement.

As a user organization we must not only stimulate science but also question and direct. I am thinking about some of the urological procedures which were announced. It was only after some years that we learned that they are either not functional or have a lot of side effects, sometimes with an irreversible loss of vital functions and large and ugly scars.

I also would like to mention the social evolution whereby children with an impairment are being eliminated after a prenatal diagnosis. This is an example where ethical borders are being crossed.

Being users we must be critical and draw the line. To cross a border is not simply a move from one country to another. It is an open and critical step into the unknown. It gives us new contacts, lets us grow, it enriches us and we learn.

This is what we hope to achieve in a good Congress.

Kerry takes over:

Each year IF presents the IF Award to an individual or organisation in recognition of the special contribution they have made to the service of people with hydrocephalus and spina bifida in particular.
The award itself is in the form of a bronze statue. It was designed and created for IF by the Swedish artist Mr Olovson.

The IF Award for the year 2004 went by unanimous decision of the international Board
to Ryggmargsbrokk- og Hydrocephalusforeningen Ryggmargsbrokk- og Hydrocephalusforeningen is the Norwegian association for hydrocephalus and spina bifida.

This Norwegian association achieved wonderful results in their own country like the leading role they played in establishing the centre TRS. The excellent work don in Norway was shared from the beginning with the international community. From the start of IF Norway played an important role in our federation. Otto and Moyna Berg and more recently Runa Schoyen were active members of the IF board.

In the development of the IF projects in developing countries the Ryggmargsbrokk- og Hydrocephalusforeningen proved immediately their solidarity. Fundraising campaigns, but also lobbying in their government , Norad, Atlas Alliance resulted in the financial input IF needed to succeed in this new challenge. The Norwegian association was closely involved in the whole process and motivated African parent groups to grow and fight together for their children. The whole association supported the African solidarity and many of them are involved in training and exchange projects in East Africa.

Ryggmargsbrokk- og Hydrocephalusforeningen was the first country I know that elected an adults with spina bifida as their president. This is only one of the progressive acts they did and in witch they became an example for others world wide.

With this award IF express its great appreciation for the work done by Ryggmargsbrokk- og Hydrocephalusforeningen improving the life’s of many children and adults with hydrocephalus and spina bifida in Norway, in Africa and world wide.

Pierre Mertens hands over the award to Eli Skattebu and declares the conference to be open.


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13/09/2004 crossing Borders - opening speech - Eli Skattebu
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