Friday, March 12, 2010

Happy Correction: Intern. Fed. for Spina Bifida and Hydrocephalus Are Active Opponents of Infanticide

The day after I posted the last blog entry, I received a friend request and a message from Renée Jopp, who works with the International Federation for Spina Bifida and Hydrocephalus (IFSBH).

His note was friendly and reminded me of something I should have already known. It's not true that all advocacy organizations associated with hydrocephalus and spina bifida have ignored the issue of infanticide.

That may be a uniquely American characteristic, but I don't know for sure.

To the point, the IFSBH has a strong position paper on the Dutch infanticide program. I wasn't asked to do a correction or to share that information.

I'm correcting myself and sharing this because it's the right thing to do. I wish all my screw-ups were ones that resulted in happy corrections like this one.

This link contains a summary of the organization's activities in terms of opposing euthanasia of newborns with spina bifida and hydrocephalus:
BOSK, IF's Dutch member organisation, wrote a letter to the Dutch government opposing against the Groningen Protocol and the proposal to institute a specific committee to judge if doctors handled carefully. To read the English translation of this letter, click doc here.

IF also wrote a pdf resolution on Active Termination of Life of Newborn Children with Spina Bifida and/or Hydrocephalus and the Right to Live. This document was unanimously adopted by IF's Annual General Meeting on 30 June 2006 in Helsinki.

At the same time, IF took the lead in drafting an EDF resolution on this matter concerning newborn children with all sort of disabilities. The pdf EDF resolution on Active Termination of Life of Infants with Impairments and the Right to Live was adopted by the EDF Annual General Assembly in May 2006.

The right to live is also specifically stated in the pdf UN Disability Convention which was adopted in December 2006.
In 2009 public interest lawyer James E. Wilkinson spent his summer working as an IF volunteer, researching international human rights arguments against euthanasia of children born with severe disabilities. The IF Position Paper on the Groningen Protocol examines the key factor for the Protocol and similar decision-making, the anticipated “quality of life” for an infant with impairments. The paper concludes that practices, like the Groningen Protocol, that counsel parents that it is best for babies to die because they have severe impairments, violate international human rights standards.
In January 2010 Dutch paediatricians suggested to extend the Groningen Protocol with the criterion "future unbearable suffering". They claim that newborns are now dying of starvation, because doctors fear prosecution when they end the life of a newborn with severe disabilities who is not suffering at birth, but will be in the near future. Both BOSK and IF both responded with press releases. Read the article that was published in the Belgium weekly Tertio.
Most of the organization's material is in pdf format - I'll see if I can get excerpts from some of the documents posted here at a later date. --Stephen


Nightstorm said...

Hey I have been lurking around on your blog, it's good to find another advocate for Neurodiversity that isn't on the autism spectrum, I was kinda afraid we would have monopoly on that.

I'll definity read those links, my knowledge on the politics of hydrocephlus and spinda bifida is severally lacking.

Jay W said...

Jay Wilkinson here. I did the Intl Human Rights research on the Groningen Protocol and other such practices for IF last year. I have an updated version of the paper awaiting word on publication in Europe. Let me know if you want to see the updated version.