By Pierre Mertens - 12th October 2012
Many people with spina bifida and/or hydrocephalus fear that potential employers struggle to see beyond their disability
Despite improvements, many people with spina bifida and hydrocephalus still face significant challenges, writes Pierre Mertens
The first ‘World spina bifida and hydrocephalus day’ will be celebrated on 25 October 2012 under the theme, ‘Unfold their potential, (y)our return on investment’. The main event is a photography exhibition organised by the international federation for spina bifida and hydrocephalus (IF) and its member associations in collaboration with Northern Irish MEP Diane Dodds. The exhibition takes place from 22-25 October 2012 in the European parliament in Strasbourg.
The first world spina bifida and hydrocephalus day and the exhibition show the dedication, courage and hard work of people with spina bifida and hydrocephalus (SB-H), their families, doctors, friends and associations, fighting everyday for the rights of people with SB-H. The events aim to shape political agendas to promote accessible healthcare, social inclusion and participation in the labour force for people with these disabilities.
While medical and healthcare advances have greatly improved the lives of people with SB-H, there are still significant challenges and issues that must be tackled. Many children and adults living with SB-H don’t have access to the right treatment and care services. The situation is worse once a person with complex needs turns 18. Hardly any coordinated health care for adults is available, putting a huge burden on these individuals. Stigma and discrimination remain a reality in many countries even within the European Union, which create obstacles in access to healthcare, education and employment.
The exhibition ‘Unfold their potential, (y)our return on investment’ aims to deliver powerful worldwide messages. The right to proper health care and treatments for children with SB-H should be respected. Newborns with SB-H will grow into children who have the same aspirations for their lives as other children do. Children with these disabilities need proper treatment to preserve their chances of ever having a meaningful life.
In most cases, treatment can be made easily available. We should never see images of small children with enormous heads, or children who become blind and intellectually impaired and eventually die due to the accumulation of cerebrospinal fluid in their brains. Unfortunately there are still such children all over the word and even in some parts of the European Union. Children with SB-H have the right to proper healthcare and to be treated in line with the best knowledge and expertise available.
Adults with SB-H should be provided with specialised and comprehensive healthcare. The vast knowledge and experience of professionals working with children with SB-H need to be developed into coordinated and holistic health services for adults. Adults with SB-H often find that appropriate multidisciplinary healthcare is not available and they have to bear the additional costs necessary for their basic health. In 2012, only a small number of countries worldwide offer adults with SB-H the multidisciplinary care necessary for the maintenance of health.
Workplaces need to be disability-friendly to facilitate participation in the labour force and independent living. Many people with SB-H 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 SB-H have the right to perform a job that caters to their specific needs, to live independently and make autonomous decisions concerning their lives.
The aim of our member’s pictures at the exhibition show that people with SB-H can have fulfilled and active lives if society invests in them. Governments have committed to this investment by ratifying the United Nations convention on the rights of persons with disabilities. Now they should respect this commitment.
Pierre Mertens is president of the spina bifida and hydrocephalus international federation