World SBH Day 2012

The first World Spina Bifida and Hydrocephalus day

The first World Spina Bifida and Hydrocephalus Day (25th October 2012) will be celebrated in the European Parliament in Strasbourg with a Photography Exhibition entitled ‘UNFOLD their potential, (y)our Return on Investment’. The exhibition is organized by IF with the Patronage of Mrs. Diane Dodds (Non attached Member of European Parliament) and the participation of people with Spina Bifida and Hydrocephalus and their representative organisations throughout the world. The theme of the 2012 edition of the World Spina Bifida and Hydrocephalus Day is ‘UNFOLD their potential, (y)our Return on Investment’ which was used as a title for the exhibition. This theme aims at conveying the message that policy makers need to invest and capitalize expertise to unlock the vast potential of people with Spina Bifida and Hydrocephalus.

The exhibition takes place from the 22nd to the 25th October 2012 in the Galerie Sud, 1st floor LOW building of the European Parliament in Strasbourg, and shows pictures of people with Spina Bifida and Hydrocephalus from eighteen different countries covering four continents. The exhibition will be formally open with a ceremony on the evening of the 23rd followed by a cocktail reception.

The exhibition is a result of a photography competition organised by IF - We have received over 181 pictures from 21 associations representing 19 different countries from 5 continents-. A jury composed of 3 professional photographers, a person with Spina Bifida, the exhibition’s designer and Diane Dodds (Non attached Member of the European Parliament), have conducted three stages of selection and the winning picture will be announced at the opening ceremony on the 23rd October 2012 at the European Parliament in Strasbourg.

Read the Press Release

Download the Exhibition Catalogue

The exhibition ‘UNFOLD their potential, (y)our Return on Investment’ aims to deliver powerful worldwide messages:

Children with Spina Bifida and Hydrocephalus have the right to proper health care and to be treated in line with the best knowledge and expertise available.

New borns with Spina Bifida and Hydrocephalus will grow into children who have the same aspirations for their lives as other children do. A child who develops Hydrocephalus needs proper treatment to preserve his or her chances for a meaningful life. Treatment can almost always be made easily available and so we should never see images of small children with enormous heads, or children who become blind and intellectually impaired due to the accumulation of cerebrospinal fluid in their brains. Unfortunately there are still such children in many countries throughout the world and even in some parts of the European Union.

A comprehensive multidisciplinary care and follow up throughout the lifespan of people Spina Bifida and Hydrocephalus is a necessity.

The vast knowledge and experience of professionals working with children with Spina Bifida and Hydrocephalus needs to be developed into coordinated and holistic health services for adults. Adults with Spina Bifida or Hydrocephalus often find that appropriate multidisciplinary health care is not available and they have to bear the additional costs necessary for their basic health. In 2012 the situation remains that only a small number of countries worldwide offer adults with Spina Bifida and Hydrocephalus the multidisciplinary care necessary for the maintenance of health and a fulfilled life.

People with Spina Bifida or Hydrocephalus should not be excluded from the labor force just because of their disability.

Many people with Spina Bifida or Hydrocephalus fear that potential employers struggle to see beyond their disability, putting them at a disadvantage when applying for work. They face difficulties in finding and maintaining work, a situation which is exacerbated as they grow older. There is a huge need for a cultural change towards disability friendly measures in the workplace.  Accessibility, both in the workplace and in getting to and from work remains a priority. People with Spina Bifida and Hydrocephalus have the right to perform a job with flexible working hours according to their needs, to live independently and make autonomous decisions concerning their lives.