“What do you want to do when you leave school?” A casual conversation starter I’ve probably had with each of my children at some point – even repeatedly. It had an additional context when I raised it with Joseph recently in a quiet moment.
In his fourteen years Joseph has gone through more prospective careers than most of us could think of; ranging from a long period when he was convinced he would be a priest to only recently wanting to ‘go into business’ operating a pizzeria out of our kitchen (Mum had other ideas!).
Sometimes this kind of exchange is simply banter, a time filler exploring the thoughts and ideas of a child with ever-expanding horizons as the world opens up before him or her.
“A firefighter, Dad!” “But Joseph, the fire brigade probably won’t accept someone with Down syndrome, mate. It just won’t happen.”
Okay! I know! That sounds like a harsh response, but it’s not. Joseph and I have great conversations about all sorts of things and I am confirmed in my belief that, like all children, as he grows up he needs to learn to make distinctions between daydreams and reality. Anne and I are also as firmly committed to providing him with the very best educational and emotional platform we can. We’ve done that for all our children, but in Joseph’s case fleshing it out requires somewhat of a different approach from the others.
The question of disability is a consistent theme throughout Gerbert van Loenen’s book: Do You Call this a Life? Blurred Boundaries in the Netherlands’ Right-to-Die Laws. Chronicling and analysing the history and progression of the Dutch affair with euthanasia, van Loenen’s crisp prose refers constantly to the changing and challenging in Dutch academia and politics of concepts relating to the worth of human life. In summary: once human life is valued only in subjective terms of relative merit or worth there is an inexorable extension of application, in terms of euthanasia laws, from a limited cohort to almost anyone.
It is unfortunately all too common an experience for those living with disability and their families that the subjective evaluation: “I would rather be dead than…” raises its ugly head. The Dutch are not alone here. But what the Dutch and the Belgians have effectively done with their respective euthanasia laws is enshrine the ‘Life Unworthy of Life’ principle in both law and practice with respect to the most grave of matters: life and death.
I asked a Belgian colleague recently why there has been no apparent organised rebuttal of their Euthanasia laws from the Belgian disability community. After all, such organisations exist everywhere that euthanasia and assisted suicide laws have been debated in recent years and the ‘disability voice’ is a potent force. He answered by saying that people living with disability in his country are well respected and have excellent supports focussed on helping people achieve their potential and independence. Good news. But he then added a caveat to the effect that the focus on achieving potential is highly utilitarian. Those who cannot jump this high hurdle in Belgian society are shunned and have no voice; echoes of the ‘useless eaters’ of an earlier European society.
Van Loenen’s observations of Dutch society are similarly chilling:
Writing about the care of people with mental disabilities, [Dutch Ethicist Hans] Reinders noted the tendency of caregivers to want these dependent individuals to develop, even the severely handicapped ones. If caregivers apply this way of thinking, it implies that the treatment must help the disabled individual improve.
When this proves impossible, medical staff are confronted with their own limits. This is uncomfortable. Reinders quotes the German remedial educationalist Emil Kolb, who describes this phenomenon: “When there is nothing more to examine or to do, the researchers and doers are confronted with the possible futility of their own actions. And this must not be allowed to happen!” Physicians cannot allow the disabled individual to simply be; they must help him to develop. Emil Kolb summarizes this belief “What does not become something, is nothing.”
People who consider their own development and independence to be important and who see themselves as the author, creator of their own life story, filled with choices and possibilities, will have a problem with individuals who are dependent on other people and experience no development at all. “From the perspective of people who view their own existence as a project of which they themselves…are the author, a severely disabled life must inevitably seem completely pointless. A condition that appears to them like death, even if it does not coincide with it.”
The Dutch and the Belgians have comprehensively failed to make the distinction between human potential and the intrinsic dignity of the human person: “What does not become something, is nothing.” Even the idea of “development and independence” is tainted because such development is not seen as a good end in itself but rather an expectation placed upon an individual by these societies as a condition of membership. Of course Anne and I want Joseph to experience the goods of life to the greatest extent possible, but not because access, equity and achievement provide a justification for his existence!
Van Loenen marks the beginning of the Dutch flirtation with euthanasia as the publishing of a book: Medische macht en medische ethiek [Medical power and medical ethics] by physician and scientist Jan Hendrik van den Berg in 1969. According to Van Loenen, it was Van den Berg’s book that started the Netherlands thinking about the sense and nonsense of medical action, including Van den Berg’s distinction between meaningful and meaningless life:
“Van den Berg’s influential booklet bears this striking feature: disabled and ill individuals are only examples, objects in an argument. Whether they are mentally competent or not, able to speak or not, Van den Berg never gives them a voice. They are merely objects in a display of what medical power can lead to. Look, these people are still alive, but should we be pleased about it? Wouldn’t it have been better if the physician had never treated them? Wouldn’t it be better if the physician would let them or cause them to die now?”
Naysayers will “tsk” at the comparison between the beginnings of the Nazi Aktion T4 extermination program that saw the destruction of 75,000 disabled persons in three years, and the beginning of the ‘Dutch experiment’ with euthanasia. There is, however, a striking similarity between the effect on Dutch thinking that Van Loenen attributes to Van den Berg’s book and that of the 1920 German publication by Psychiatrist Alfred Hoche and Jurist Karl Binding of Permitting the Destruction of Life Unworthy of Life, a text that heavily influenced the notorious Nazi euthanasia program. Likewise, the various “hard cases” discussed in Van den Berg’s book are reminiscent of the first Nazi euthanasia case, that of “baby Knauer”, authorised by Hitler’s decree in 1938.
Van Loenen’s interest in his subject began at the time his partner, Niek, suffered a debilitating brain injury:
“I started writing it when circumstances changed me from an average Dutchman who thought of euthanasia as one of the crown jewels of our liberal country into someone who was shocked by the harsh tone used by the Dutch when they talk about handicapped life.”
The personal history underlines the significance of the work and provides the reader with a poignant context; but, in keeping with an obvious adherence to academic rigour, the rest of the text is scrupulously objective and absent of rhetoric.
Having said that, Do You Call this a Life? Blurred Boundaries in the Netherlands’ Right-to-Die Laws is far from being a dry academic tome. It is an easy yet compelling read, which deserves to be on the bookshelves of every library and should be a compulsory text for students and politicians alike.
Van Loenen, an academic, writer and editor, presents us with a compelling and well written look at the history and experience of the “Dutch experiment” that serves as a necessary warning to other jurisdictions. As Dutch Professor of Ethics Theo Boer recently warned: “Don’t go there.”
Our thanks, too, to the publisher for this first translation from the original Dutch text. Many outside Holland will be aware of the markers of the progress of the “Dutch experiment” but few, including this writer, would have hitherto had access to the breadth of activity and academic complicity that developed prior to the legalisation of euthanasia in 2001 and continued beyond.
Ultimately, it is the story of a series of inexorable compounding errors based upon a false and dangerous premise. In Van Loenen’s words: “Making euthanasia and physician-assisted suicide legal started a development we did not foresee. The old limit ‘thou shalt not kill’ was abandoned, a new limit is yet to be found.”
Paul Russell is director of HOPE: preventing euthanasia & assisted suicide Inc. and is Vice Chair of the Euthanasia Prevention Coalition International. He writes regularly on this subject at www.noeuthanasia.org.au
Australian readers can also purchase a copy of the book for $35.00 (incl P & H) via: http://noeuthanasia.org.au/books.html