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Defying disability
Carol Wanjira, 20, was born with Spina Bifida. Two decades ago, her father walked out on the family because of her disability. Today she is independent and takes care of her grandparents, proving him wrong against all odds. She performs household chores, prepares meals and does the laundry. Every week she catches a bus to town from Kawangware for wheelchair basketball training sessions. She is also a member of the Spina Bifida and Hydrocephalus Association of Kenya, SHAK, a support group within the IF project at Bethany Kids. Carol was one of the adult speakers at IF's African Workshop 2009 in Kenya. Read her story in the Daily Nation. |
Carol Wanjira lives a normal life and hopes to represent Kenya in international wheelchair basketball matches
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MEPs back human rights for disabled
MEPs on the Human Rights Committee have backed a potentially huge shift in the way Europe treats its 50 million disabled citizens. They backed EU membership of the UN Convention on the Rights of People with Disabilities that treats disability not as a social welfare issue but as a human rights issue and a legal issue. This is a step away from the current practice of treating disabled persons as objects of charity and social protection. If the convention is adopted into EU law it would give disabled people rights in areas like education, employment and transport. Parliament passed the Convention in April last year and called on governments to ratify it. Read more here. |
People with disabilities need to be involved in the implementation of the UNCRPD
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All disabled children have the right to live with their family
The Committee of Ministers of the Council of Europe (CoE) has recently adopted a text recommending that member states no longer place children with disabilities in institutional care and instead give preference to community living. States are urged to guarantee children with disabilities the same right to family life, education, health, social care and vocational training as all other children. Mechanisms should be established to involve children with disabilities and their families in the process of service development, as they are vital stakeholders. Several million children and adults with disabilities live in long-term care institutions in the 47 Council of Europe member states. Read more on the CoE website. |
All children have the right to participate in community living
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Do not extend the Groningen Protocol
Dutch paediatricians are suggesting to extend the Groningen Protocol with the criterion "future unbearable suffering", claiming that the current rules do not work. Doctors fear prosecution when they end the life of a newborn with severe disabilities who is not suffering unbearably at birth, but according to them will be in the near future. Both BOSK and IF have issued press releases to show their concern and disapproval. IF's position paper on the Groningen Protocol shows that the current rules are already discriminatory. Extending the rules is unacceptable. Read the article in the Belgium weekly Tertio.
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Negative perceptions about disabilities can influence life and death decision making
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Parliamentary questions to European Commission about Neural Tube Defects
Portuguese Euro-parliamentarian Ilda Figueiredo is an active member of the Parliament’s Intergroup on disability rights. After a meeting with the Portuguese Association for Spina Bifida and Hydrocephalus, she submitted written questions to the European Commission about the need for the EU to take a more ambitious approach against Neural Tube Defects. She stressed the benefits of folic acid (vitamin B9) and asked the Commission to provide an overview of what studies regarding the fortification with folic acid are currently conducted. She also asked the Commission what measures it is considering to support EU countries in the area of preventative health and nutrition. Her questions to the European Commission further support the case also made by the report “Act against Europe's most common birth defects” which IF recently conducted together with Bayer HealthCare. |
MEP Ilda Figueiredo (Portugal, GUE), one of the vice-presidents of the European Parliament's Disability Intergroup
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Act against neural tube defects in Europe now!
The event in the European Parliament, co-organised by IF and Bayer Schering Pharma and hosted by MEPs Dr. Antoniya Parvanova, Ms. Edite Estrela and Ms. Ria Oomen-Ruijten was a huge success. A great number of stakeholders from all over Europe and Members of the European Parliament were impressed by the presentations from Pierre Mertens, Dr. Hermien van der Walle (Eurocat) and Petter Feuk, a young man with Spina Bifida. Eventhough it has been scientifically proven in 1991 that the use of Folic Acid can help to prevent Spina Bifida, the number of neural tube defects in Europe has not decreased since. All eyes are focussed on the European Parliament for measures to make this happen. More information.
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Pierre Mertens (IF) and Dr. Ralf Bannemerschult (Bayer) present the report "Act against Europe's most common birth defects"
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