lieven20 June 2017 // Last week, from 13 to 15 June 2017, the 10th session of the Conference of States Parties (COSP) to the Convention on the Rights of Persons with Disabilities (CRPD) took place at the United Nations Headquarters in New York. IF was represented by our Deputy Secretary General, Ewa Kampelmann, and Secretary General Lieven Bauwens.

The general objective was to discuss the second decade of the CRPD by looking at the inclusion and full participation of persons with disabilities and their representative organizations in the implementation of the Convention.

Lieven Bauwens was the first speaker at the Plenary Session of the COSP on June 14th. He highlighted the need to fight stigma, respect the rights of children born with disabilities and to work on universal registration of all children, starting immediately after birth. IF’s call upon members states is not only based on the CRPD, but registration at birth is also an essential part of the implementation of the Sustainable Development Goals (SDGs). It is in line with the Agenda 2030’s objectives such as reducing inequality and achieving a full inclusion of people with disabilities in our society. The full IF intervention can be viewed on UN Web TV, at the start of this video. The transcript of Lieven’s statement can be read here:


Your Excellencies,

Ladies and gentlemen,

I would like to thank you for the opportunity to address the 10th Conference of State Parties on the CRPD on behalf of my organisation.

My name is Lieven Bauwens, I am the Secretary General of the International Federation for Spina Bifida and Hydrocephalus, the global umbrella of national spina bifida and hydrocephalus associations. At this moment, we have 60 official members organisations on 5 continents. Our organisation is a global disability-specific member of the International Disability Alliance, and we hold consultative status to Ecosoc since 1991.

Spina Bifida is a congenital disability. Children are born with it. A fetus develops it during the very early stages of pregnancy. Hydrocephalus has many causes, it can be congenital, but the majority of children will develop it early in life as a consequence of a neonatal infection.

I am expanding a bit on this because it is important to understand that children born with these disabilities, with proper treatment and support, can thrive and live fulfilling lives. In 2015, UNICEF executive director Anthony Lake said in the wake of a conference of state parties on the CRPD: “Every child has unique qualities, but every child, and also that child with a disability, needs support to unleash these qualities”. But without treatment, without support, children born with a disability live difficult lives. In the case of spina bifida and hydrocephalus, many will die. And we are talking, for spina bifida alone, about thousands and thousands of children, estimated around 500 thousand children, every single year. There is stigma, there is social exclusion of the child and often also of the mother. All because of stereotypical thinking on congenital disabilities. And the same is true for hydrocephalus, although not all hydrocephalus is congenital.

I would like to use this opportunity to focus on the issue of data and birth registration. The Sustainable Development Goals call in target 16.9 for birth registration for all. We understand that registration of children is difficult; that, for example, about half of all children in Sub-Saharan Africa are not registered before their fifth birthday. We know that in the case of children born with spina bifida, a majority of them are considered “stillbirth”... They have not died because of the disability, they die because care is not available. But rephrasing the quote of Dr Lake, all newborns, with or without disability, would undergo the same fate if abandoned.

CRPD Article 18 paragraph 2 states that children with disabilities shall be registered immediately after birth and have the right to a name, nationality, and being cared for by their parents. I want to emphasize that only with correct data, we can plan to care for them, we can plan to support them.

In our work globally, we see that thousand of children born with disabilities go unnoticed. They are never registered, do not receive any treatment and disappear without a legal trace.

We believe that this denial of existence is the gravest violation possible of their basic human rights. This is a story that is also true for other disabilities that children are born with. Think about down syndrome, and many others.

However, some countries and regions do show that it can be done. So, in the spirit of truly “leaving no-one behind,” I would call upon member states to focus on children born with a disability while working on universal registration of all children, and this immediately after birth.

Many thanks for your consideration

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