The fallout from the Otago University Bioethics paper on screening for Down syndrome continues in a new paper “Bioethics and the New Media” by Alberto Giubilini and Francesca Minerva, the same authors of a paper last year supporting infanticide for Down syndrome.
This time Giubilini and Minerva are expressing surprise that the Down syndrome community opposes their agenda of eugenics and infanticide. They seem to think that they need to reconsider how they communicate to the “non academic public” because we don’t accept their views.
In their new paper Giubilini and Minerva start with saying:
“A few months ago, Gareth Jones and Robert Cole published a paper in the New Zealand Medical Journal in which they argued that it is better to use non-invasive prenatal diagnosis tests for Down syndrome rather than more invasive ones. The paper, quite surprisingly, elicited some very heated reactions from the public.”
In this case the “public” is Saving Downs and our supporters, who rightly condemned the paper. To recap, the Jones/Cole paper stated:
“First, we value an ethic that stresses the importance of ‘doing the most good’. On these grounds we accept that in some cases, the perceived disadvantages resulting from a Down syndrome pregnancy (to child and family) may outweigh the perceived good from the child’s life.”
As pointed out in our rebuttal this statement is eugenic and discriminatory. What is so surprising that the Down syndrome community would object to such an attack being made against them?
The Disability Commissioner has said, in response to our complaint lodged with the Human Rights Commission (HRC) about the Jones/Cole paper:
“The paper raises serious human rights issues needing the commission’s attention. The HRC is developing a work plan around bio-ethical issues and disability, and will be incorporating into this plan work in direct response to the article.”
If Giubilini and Minerva are really surprised that you can go around insulting a section of society like this without a reaction, then they really are somewhat disconnected from the reality of living with Down syndrome and the reality of how to treat others.
Giubilini and Minerva then continue with:
“About a year before this episode, even more violent reactions were caused by a paper on abortion that we published in the Journal of Medical Ethics.”
They then question how they (the academics) should refocus the delivery of these pearls of wisdoms to the rest of us (the non academics):
“These recent events seem to suggest that we need to rethink the way results of academic research are communicated to the non academic public: How should academics communicate and spread the results of their research among the lay public? And how should the media report and disseminate the results of academic reflection on bioethics?”
And why exactly do the bioethicists think they need to rethink the way results of academic research are communicated to the non academic public? This is what they tell us:
“Although these questions are relevant for any field of academic research (to the extent that they have a practical or cultural relevance for society and individuals), they are particularly pressing for bioethicists for at least two reasons.
First, the political agenda in democratic countries is becoming increasingly concerned with regulation of biotechnologies, of medical practices and health-related issues which, in turn, have a deep impact on the life of people and on their choices.
Second, issues in bioethics deal with topics, such as life, death, the moral status of human beings (and many others) that touch upon people’s most profound and personal values. For this reason, very often ideas which go against traditional values are perceived with an immediate feeling of shock and an immediate impulse to rebut the proposal, prior to any rational, cold reflection.
And the problem is that such reactions cannot be easily dismissed as a sign of irrationality of people who cannot fully appreciate the opportunities of new biotechnologies or the freedom and well-being that some medical options can promote.”
So, in good old plain English: They would like to dismiss anyone who disagrees with their conclusions as being irrational because we don’t appreciate the opportunities of what they promote. Well, that is all very elitist and pompous, but what exactly are these opportunities of freedom and well-being they promote that we don’t appreciate?
Well, we have already seen Jones and Cole theorise that in can be in the greater good not to have children with Down syndrome in our world because of a perceived disadvantage to themselves and their families. That is just plain old academic nonsense, based in perceptions rather than fact and totally removed from the actual experience of people living with Down syndrome. We have fully rebutted that paper here. (It was also covered on the 31 March 2013 TV1′s Q&A programme. There are three parts to the feature, the interview with Rob Cole co-author of the paper and Mike Sullivan of Saving Downs, the interview with the NZ Disability Commissioner and the panel discussion. There is a video and transcript for each of those at this link. You can also go to the on-demand episode of Q&A for 31 March 2013 and it starts at 25 minutes).
And what of Giubilini and Minerva themselves? What opportunities of freedom and well-being do they promote that we don’t appreciate?
That it should be permissible to kill new born babies who have Down syndrome.
Yep, that’s it. Giubilini and Minerva support killing babies with Down syndrome.
And there is a problem, because the non-academics don’t agree.
And there is another problem. The Down syndrome community isn’t lying down and been rolled over.
And we can’t be readily dismissed as being irrational.
And the solution? Giubilini and Minerva want to change the way they promote this wonderful opportunity that we were denied to kill our babies after they were born. Because we were denied the freedom and well-being that we would have had with this wonderful idea they want to promote.
I think that at this point, most rational people will have worked out there is a serious disconnection between this academic nonsense and the reality of what it means to be human and to recognise the dignity of all human life. After all, the dignity of all human life is the founding principle of human rights, one that Giubilini and Minerva are trying to redefine.
So what did Giubilini and Minerva say in their paper promoting infanticide? It’s pretty ugly, cruel, offensive and dehumanising, but here goes:
“An examination of 18 European registries reveals that between 2005 and 2009 only the 64% of Down’s syndrome cases were diagnosed through prenatal testing. This percentage indicates that, considering only the European areas under examination, about 1700 infants were born with Down’s syndrome without parents being aware of it before birth. Once these children are born, there is no choice for the parents but to keep the child, which sometimes is exactly what they would not have done if the disease had been diagnosed before birth.”
So, they start with the classic eugenic argument of referring to people with Down syndrome as a disease. They then infer that some parents would have aborted said disease without providing any evidence to support this.
And then the hateful, nasty, cruel and inhumane stuff. Actually “disease” is pretty nasty, but it gets worse:
“Although it is reasonable to predict that living with a very severe condition is against the best interest of the newborn, it is hard to find definitive arguments to the effect that life with certain pathologies is not worth living, even when those pathologies would constitute acceptable reasons for abortion. It might be maintained that ‘even allowing for the more optimistic assessments of the potential of Down’s syndrome children, this potential cannot be said to be equal to that of a normal child’. But, in fact, people with Down’s syndrome, as well as people affected by many other severe disabilities, are often reported to be happy.
Nonetheless, to bring up such children might be an unbearable burden on the family and on society as a whole, when the state economically provides for their care. On these grounds, the fact that a fetus has the potential to become a person who will have an (at least) acceptable life is no reason for prohibiting abortion. Therefore, we argue that, when circumstances occur after birth such that they would have justified abortion, what we call after-birth abortion should be permissible.”
So they have just presented the “unbearable burden” case for eugenics. Jones/Cole used a similar argument with the term “disadvantaged”. Giubilini and Minerva have then just extended it to infanticide (what they term after-birth abortion in some bizarre attempt to redefine the word) because in their world a baby, is, well, not a person, and therefore it should be permissible to kill them. Especially if they are a “burden”. Even more so should they have Down syndrome.
That is the opportunity they want to promote, the one the non-academics don’t appreciate, killing babies with Down syndrome.
In their new enlightening paper Giubilini and Minerva conclude with:
“It seems to us that, in order to promote a properly informed participation of the public to the academic debate in bioethics, it is important to encourage and to facilitate the translation of the bioethics language into a less specialized language, and to put more effort into providing readers with an appropriate explanation of the context in which ideas are developed as well as the state of the art of the actual debate in bioethics.”
It seems to me that what is required is for the bioethics community to start showing the Down syndrome community a bit of respect and start behaving in a way that respects the basic dignity of all human life. Gosh, they could even involve the Down syndrome community in a respectful dialogue, rather than making academic judgments about the value of their lives.
If they want to use different language, they could start talking in terms that define the basic elements of being human. Like:
Unconditional love: Love that is without any condition what-so-ever.
Compassion: the selfless respect and service of another’s needs.
Acceptance: accepting another person as a unique individual worthy of respect and dignity.
Dignity: recognising the innate right to respect and ethical treatment.
All of those human terms would be a fresh change for the language of the bioethicist who sees those with Down syndrome as “burdens”, “disadvantages” and worthy targets for infanticide. All based in their own ignorance, fear and academic theory, as opposed to the actual lived experience of our wonderful community.
The irony is that when you have a child with Down syndrome, you learn so much about those defining human qualities. When we mature in life, we often start to think about how we contribute to making the world a better place. We start to take actions to create a culture where love triumphs over ignorance and fear.
I wonder about bioethicists like Giubilini and Minerva. When they approach their own deaths, will they look back at their contributions to the world and be happy that they were the ones who promoted infanticide against our community? Somehow I doubt it. Love will triumph in the end.