Black Book Down

Everyone is different and equal

People with Down syndrome have become poster children for a new generation of genetic screening tests conquering the world. In an interview about these tests, professor emeritus human genetics, former member Health council and UNESCO bio-ethics committee Dr. Galjaard, says Down syndrome should disappear.....Why?

“If freedom of choice results in a situation that nearly no children with Down syndrome are born, society should accept that”, Dutch minister of Health, Mrs. Schippers said recently.

She said that participation in the National population screening program targeting Down syndrome is an 'individual decision' that increases 'freedom of choice'. But Paul Cobben, Professor of Philosophy and father of a son with Down syndrome believes 'it is a misunderstanding to think that screening increases your freedom. First of all you have to know what your choices are if you want to label a choice 'free'.

If the choice is Down syndrome

In the article ‘Only dummies think this is Down’, pediatrician Ko van Wouwe of Dutch research organization TNO who followed a cohort of 300 people with Down syndrome, said “they are not as happy as society wants to believe. If you put 200% effort in [a child with Down syndrome] you get 10% in return,” he is quoted as saying.

99% of people with Down syndrome disagree and view their life as brilliant:

Screening creates monsters

A dad-to-be literally pointed out: ‘if the goverment offers screening, then it must be a terrible condition’.

Paul Cobben: “I don't think that with the birth of our son a disaster happened to us. The disaster was in our head and not based on reality. The dreaded monster turned out to be a happy little boy. He doesn't talk very well yet, but pretty much knows how to engage everyone he meets.”

While screening and selective abortion is marketed as an individual 'free' choice, Inez De Beaufort, Professor medical ethics and member of the Health council warns people to suspect an appeal for 'freedom of choice' as an instrument used by a government who 'plans cuts'.

She said the individual choice is an illusion. We are very dependent upon social expectations. It is very difficult to wreste one-self from under these social expectations that weigh so heavily upon us. We don't live on an island and people need people.

Let’s talk money

In a 2014 discussion about rare, expensive genetic conditions (not Down syndrome) Professor medical Ethics Dupuis, former senator and member of the Health-council said that these 'expensive' children don't have to be born.

The College of Health-Insurers (CVZ) who makes recommendations about the mandatory health-insurance, “calls it 'unethical' to let a majority pay for a minority”.

Wait a minute: isn't insurance intended to collectively carry individual risks?

Pediatricians believe that the 'financial ability to care' of the family should play a role in decisions about life and death.

M.T. Hilhorst, Professor of medical ethics at the Erasmus University, writes about parents who do not want prenatal diagnosis: ' they have pushed the disability upon their children by not 'acting' (...) morally they can be asked to be held amenable for their choice.' “

So with our ‘social’ health-insurance 'the poor' get access to prenatal genetic screening, and in turn 'these poor' should either abort their pre-born child if an 'expensive' condition is diagnosed or bear all (financial) consequences. How's that for solidarity!

Prenatal selection prevents what?

“if more genetic defects will be detected, more pregnancies will be aborted.” Govert den Hartog, Philosophy, Ethics, Social and Political Philosophy.

In her book 'Child, illness and ethics', Dupuis describes life with a serious handicap as a 'desperate survival on very low level, without communication possibilities'. It is therefore, in its view, ' life is not worthy of living'. This is also the case if the person in question does not really suffer, she adds.

So if there is no suffering, what are we preventing?

Freedom?

“Now and in the future, it is the society who will place demands, will be paternalistic, and limit individual self-determination, in one's own interest or that of others. It is also expected that economic factors may lead to limitation of the self-determination, "said Dupuis and De Beaufort in their manual Health Ethics.”

One famous quote by Dupuis: "Arrived in the era of 'me', the Western human must realize that individual survival may no longer be of the highest value, and one must return -as it were- to a new appreciation of the collective well-being, maybe by disregarding the final wishes of the individual"

Essentially screening for disabilities will limit our freedom, harm the vulnerable and benefit politicians and pharmaceutical companies who make big profits selling their screening technology.

Targeting disabled for selection reinforces prejudice

It is better of course (less controversial) to let disabled disappear before they are born, but “lives slip through that are practically unlivable”. Kuitert, Professor ethics.

“In a conversation with the pediatrician of our son and his surgeon we were given the choice not to operate and to 'just leave it'. Our son would then die of the congenital bowel obstruction. My husband politely but clearly asked the pediatrician to stop talking and to do everything in his power to save our son. Just as he would with every other child.” Personal testimony from original Blackbook Down.

Dupuis said in a tv-show 'De worsteling' (The struggle) that she thinks it a good idea when parents refuse their 'mongoloid' simple life-saving surgery. 'If it lives it would mean a tragedy for parents', she said.

While euthanising infants is legal in the Netherlands, researcher and pediatrician Paul Brand believes there are still up to several tens of children actively killed while their deaths are booked as 'natural death'.

About half of the deaths of people with intellectual disabilities reports hastened by doctors, reports a National newspaper. In none of the cases consent was asked because patients were considered 'incompetent' despite that fact that nearly half of these patients are mildly or moderately delayed. Stories like these can be heard around the world.

Those who argue that we have to be careful not to get on a slippery slope should open their eyes: we have hit rock bottom a long time ago by legalizing others to judge the lives of disabled ‘unlivable’.

Dehumanization

Peter Singer is an ethicist working in the field of "human bio-ethics". He develops theories about killing disabled people. He came up with a new hierarchial order, where disabled babies/people are not 'persons' and therefore can be killed. Singer is the ideal person to support the deliberate and systematic eradication of disabled people because he is the child of Jewish refugee parents who escaped the Nazis. He also gained International fame as an animal activist.

Despite overwhelming scientific evidence that every person is a human being and therefore protected under Human Rights Declarations, Peter Singer just made up his own theory why disabled people fall outside his personal definition of a person. His ideas and theories are used worldwide by medical professionals and governments to justify their own dark political agendas...... the current and future practice of the systematic, deliberate eradication of disabled based on their disability.

In 1992 the Dutch Health council organized the first meeting of the "International Association of Bio-ethics" (I.A.B.). The worlds’ largest gathering of bioethics thought-leaders in the world. It's aim, a “free, open and rational debate in bio-ethics.” Singer was chosen as the Chair at the inaugural meeting. Peter Singers' influence and ideas can be seen in theories of many of the members of the Dutch Health council, who is seen as ‘authoritative’ when implementing new health policies. The Netherlands was the first country to legalise euthanasia of disabled children. The Netherlands is the first country to implement NIPT into its’ National screening program. Both euthanasia and NIPT aimed at disabled and vulnerable people spread across the globe.

If our right to exist is made dependent upon how others feel about us; then nobody can be certain of life.

Don’t change the definition of a person to that of a ‘useful’ subject

Govert den Hartog, member of the Health council and ethicist, argues that, in the case of Down syndrome, it is in the child's best interest not to be born because “life has enough challenges under normal circumstances”. In the casus ‘Wrongful life’ he compares aborting a disabled child to aborting a project. When you notice that the expected life will be a ‘pitiful plight’, it is not discrimination.

Just because Den Hartog interpretes the definition of discrimination to suit his own feelings about disabled, that doesn’t change the actual definition:

Discrimination is prejudicial treatment of people on the grounds of race, age, or sex or disability. It is a violation of our equal human rights. Discrimination before birth principally isn't different. A fetus is a person to be. If it's life is interrupted simply because of Down syndrome, that's also negative prejudice about life with Down syndrome in general. That affects everyone living with Down syndrome. That is discrimination.

Renate Lindeman is mother of two wonderful children with Down, the spokesperson for Downpride and a representative of Saving Down syndrome. Downpride takes the Dutch screening policy to the UN, calling the government initiated extermination of people based on their genes a violation of their human rights.

Please sign the petition to urge the United Nations to remind countries of their obligation to protect the inherent humanity and dignity of all human beings.