Ethics of Hope Figh/ng nega/ve stereotypes – and its consequences ‐ of people with Spina Bifida and Hydrocephalus in Europe Pierre Mertens, President IF Strasburg – 23 September 2011 Council of Europe ‐ CAHPAH
What is IF? International Federation for Spina Bifida and Hydrocephalus Global umbrella organisation 44 national / regional members (organisations of people with SB/H or their parents) / 41 countries
Domains Human Rights Prevention International Solidarity Network Development
HQ in Brussels, small office in Kampala
What is IF? IF represents people with Spina Bifida and Hydrocephalus • One of 7 Key EU networks of people with disabilities for the European Commission • Consultative status at the UN (ECOSOC) • Participatory status at the Council of Europe • Actively seeking partnerships with FFI, WHO, CDC, Unicef, OHCHR and others
Fortification-project (training, advocacy) with Akzo Nobel and FFI – www.smarterfutures.net www.ifglobal.org
What is IF? An global network of dedicated people, of knowledge Parents, professionals and adults with the impairments, national and regional organizations Annual conferences 2011: Guatemala 2012: Sweden 2013: Vietnam
WWW: website, monthly newsflashes Workshops 2010: Surgery and parent groups (Dar Es Salaam); Standards Harmonization workshop (Nairobi); Capacity Building (Dublin); Conference on Preconception Care and Preconception Health (Brussels) 2011: workshop on prevention (Amsterdam (together with Eurordis) / Brussels), Transition (Brussels), QA/QC (Dar es Salaam), Multidisciplinary Care (Kampala)
Stimulating research
What are neural tube defects (NTDs)?
Spina Bifida (and related Hydrocephalus) Anencephaly
Small defect, a lot of damage
Dr Liptak: “the most complex congenital malformation compatible with life� Nerves interrupted Paralysis below the lesion Incontinence for stool and urine Mobility problems Loss of sensation and risk of pressure wounds Hydrocephalus / secondary malformations (eg. Chiari) Resulting in a lot of medical needs
BUT: life is more than the medical deficit Concentrate on the abilities and not only at the disabilities Medical interventions should be limited to absolute minimum. Less can be more! Conservative is not always a bad word. ETV/CPC versus shunting CIC versus urological surgical interventions Prevention of pressure wounds Training is self control Qualitative technical aids
AND: primary prevention!
What are neural tube defects (NTDs)?
Role models
Untreated Hydrocephalus
Nega/ve cycle
Ins$tu$onaliza$on Termina$on of pregnancy / life Unmo$vated professionals and parents
Situa/on in … Africa
Posi/ve cycle
Figh$ng Stereotypes on disabili$es Opportuni$es for people with SB/H
UN CRPD • Ar/cle 10 states that na/ons reaffirm that every human being has the inherent right to life, and shall take all necessary measures to ensure its effec/ve enjoyment by persons with disabili/es on an equal basis with others • Ar/cle 25 lays down that persons with disabili/es have the right to the enjoyment of the highest aUainable standard of health without discrimina/on on the basis of disabili/es
WHO resolu/on on birth defects • Agreed at 63rd World Health Assembly, May 2010 • Call on member states – Preven/on of birth defects – Care for children birth defects – Fostering and suppor/ng pa/ent organisa/ons – Promote interna/onal coopera/on – Make sure ALL human rights are enjoyed by children with disabili/es – Support families
Further ac/on? Create hope with health workers and the public opinion and correct the percep/on on newborns with birth defects Establish coordinated care to improve the outcome of newborns with birth defects Fight nega/ve stereotypes on disabili/es and s/gma on NTDs Empowering parents and PWDs Create an accessible and welcoming society towards PWDs Improve data collec/on / registra/on 10/08/10