The support group Every Life Counts took their campaign to end the phrase ‘incompatible with life’ to the UN last week. You can see their members outline the importance of the campaign at the media links below and read their statement on the conference. Support for the campaign appears to be building globally.
On Wednesday, March 11th we joined with families from around the world at an important conference at the United Nations in Geneva to launch a global initiative to end the discrimination caused by the ‘incompatible with life’ label.
At the conference, medical experts and policymakers joined these families to launch the Geneva Declaration on Perinatal Care which states that: 'As medical practitioners and researchers, we declare that the term “incompatible with life” is not a medical diagnosis and should not be used when describing unborn children who may have a life-limiting condition' and also calls for better perinatal care for families. www.genevaperinatalcare.com
We have undertaken this global campaign because the phrase ‘incompatible with life’ is not a medical diagnosis and is leading to lethal discrimination against children diagnosed with severe disabilities, both before and after birth.
We've linked up with disability rights groups, support groups and medical experts right around the world because the misinformation needs to stop.
We're calling on medical professionals to stop using this term, because it misinforms parents, it pushes families towards abortion, and it denies them a chance to spend time with their children, to make memories and to heal.
Although the phrase has become common currency, ‘incompatible with life' is a medically meaningless term because no doctor can say with certainty that an unborn child, however severe their disability, would not live until birth. Every child is compatible with life and compatible with love, and we need to work together to get best care for families and to stop language that is leading to lethal disability discrimination.
The groups who have joined us in endorsing the campaign - including the International Trisomy Alliance, SOFT, the Lejeune Foundation and Now I Lay Me Down To Sleep – provide support to parents who understand all too well the harm that can be caused by this phrase.
At our conference at the United Nations evidence was presented to show that the phrase ‘incompatible with life’ is devaluing and dehumanising children diagnosed with a severe disability, with negative and sometimes lethal consequences for those children before and after birth. A new medical declaration, the Geneva Declaration on Perinatal Care, will also be launched, which aims to enlist the support of medical professionals in ensuring the phrase is not used in counselling families.
As previously noted, the Declaration has already been signed by some 200 medical professionals. Another key body endorsing the initiative is the International Children’s Palliative Care Network – the global leader in paediatric palliative care who work closely with the UN and WHO in this area.
The conference was included in the UN programme for the 28th Session of the Human Rights Council when the council was in dialogue with the Special Rapporteur on the rights of persons with disabilities. A written statement explaining the initiative was circulated to every delegate at the UN session.
Medical experts in obstetrics, neonatology, and perinatal hospice joined families at the conference in showing that the term is not a medical diagnosis. They argued that the phrase should be discontinued, just as offensive and discriminatory terms such as 'retard' and 'cretin' have been discontinued in the past. Mattie Mc Grath, the Independent deputy from Tipperary also attended and is proposing a Private Members Bill supporting the initiative.
All families in attendance have either lost their children to conditions such as anencephaly and Trisomy 13, or have children who were described as 'incompatible with life' but are still living.
Tracy Harkin of Every Life Counts said that “we've heard mothers like Mandy Dunne, whose baby girl Muireann lived for six weeks after birth with Trisomy 13, say that 'I felt those words took her life from me, there and then. Those words instil a fear inside parents, and that's not what parents or their baby needs'. Other mothers like Barbara Farlow from Canada, who is a researcher in this area, showed that the use of the phrase can lead to a reluctance to carry out beneficial interventions after birth. This is a global problem, leading to discrimination against many thousands of children like our children, and we need the use of this phrase to be discontinued.”
The conference challenged the United Nations to recognise the dignity and value of all children with terminal illness and disability. Professor Giuseppe Benagiano, a former Programme Director for the UN and WHO, said that families who had received a diagnosis of a profound disability deserved better support as they carried their babies to term.
The UN Convention states that 'States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children'. The Preamble to the UN Convention on the Rights of the Child also states that a child 'needs special safeguards and care, including appropriate legal protection, before as well as after birth'.
“Yet studies show that up to 90% of children with disabilities are aborted before birth. In particular, children with life-limiting conditions are subject to discriminatory language and attitudes which deny them their humanity and their human rights. Families who are told that their baby may not live for long after birth need our full support and holistic perinatal care, but this can only be achieved if misleading and offensive language and attitudes are discontinue," said Ms Harkin.
Report on TV3 News : 9 March 2015 - Go to 8.45
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