By Paul Russell
"What do you want to do when you leave school?" A casual conversation starter I think 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.
Joseph, in his fourteen years had had probably 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, as he grows up, like all children, 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. But we've done that for all our children, so that's hardly surprising, even if fleshing that out requires somewhat 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. Ostensibly 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 of concepts in Dutch academia and politics in relation 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 of those living with disability and their families that there will have been occasions when the kind of subjective evaluation: "I would rather be dead thanâ�¦" 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 in 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 the caveat to the effect that the focus on achieving potential is highly utilitarian; that those who cannot jump this high hurdle in Belgian society are shunned; have no voice. Echoes of the 'useless eaters' of an earlier European society.
Van Loenen says something similarly chilling about Dutch society:
(Dutch) Ethicist Hans Reinders describes how the physicians' views on what makes life valuable may influence how they deal with their patients.
Physicians and caregivers might believe that the valuable life consists in each individual developing into something greater. Writing about the care of people with mental disabilities, 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."
It is important how a physician views his own life, says Reinders, because this view affects the physician's ideas on the value of a dependent disabled life. 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 themselvesâ�¦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 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. Indeed. Even the idea of 'development and independence' here 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, for 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, 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 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 on the progress of the 'Dutch experiment' but few, including this writer, will have previously had access to the breadth of activity and academic complicity that developed over the period prior to the law in 2001 and then beyond.
Van Loenen marks the beginning of the Dutch flirtation with euthanasia as the publishing of a book, Medische macht en medische ethiek in 1969. The author, physician and scientist Jan Hendrik van den Berg, says Van Loenen, started the Netherlands thinking about the sense and nonsense of medical action.
The point Van den Berg tried to make in 1969 was that a distinction should be made between meaningful and meaningless life, says van Loenen.
"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 'tisk, tisk' at the comparison with the beginnings of the Nazi Aktion T4 extermination program that saw the destruction of 75,000 disabled persons in three years, and this beginning of the 'Dutch experiment' with euthanasia. There is, however, a striking similarity between the effect on Dutch thinking that van Loenen's attributes to Van den Berg's book and that of the 1920 German publication by Hoche and Binding of Permitting the Destruction of Life Unworthy of Life. Van den Berg discusses various 'hard cases' in his book that, by van Loenen's description, remind me of the first Nazi euthanasia case by decree of Hitler of 'baby Knauer' in 1938.
In his book about Binding and Hoche, Anthony Horvath makes the observation that it was their couching of the discussion in pseudo-scientific terms that created its irresistible appeal for the Nazi's because it enabled this otherwise outrageous proposition to be reconciled with German domestic law at a time in history where the economics of disposing of those whose very existence came at significant cost to society created an additional 'rational' reason to proceed.
Horvath summarizes the errors in what flowed from Binding and Hoche's work; he could easily have been referring to Van den Berg:
â€¢ Deference to 'experts,' including deference by 'experts' to other 'experts,' is dangerous.
â€¢ Allowing ethical considerations regarding life and death to be linked to the interests of the 'social organism' (society or the state) is dangerous.
â€¢ Believing that there is one set of moral principles for the 'individual' and another set for the 'social organism' is dangerous.
â€¢ Asserting that certain ethical considerations, behaviours and attitudes flow directly from scientific data is dangerous.
â€¢ Behaving as though ideas - even grotesque, inhuman, ideas - can be carefully considered for their relative merits as though they have no consequences or implications is dangerous.
Van Loenen's interest in his subject began at the time his partner, Niek, suffered a debilitating brain injury. He writes: "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." He recounts his experiences in chapter 8.
Here he gives us an insight into why he began this huge undertaking. The story 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 not a dry academic tome. Far from it. It is an easy yet compelling read. It deserves to be on the bookshelves of every library and should be a compulsory text for students and politicians alike.
Ultimately, it is the story of a series of inexorable compounding errors based upon a false and dangerous premise. We should all learn to fear such an outcome.
Doctors deliberately killing their patients have been anathema in the profession since Hippocrates. Yet this reality seems, sometimes, to be missing from this debate in talking about self-evident errors and where they may lead. Van Loenen recently made a similar observation in a talk he gave in the USA; a fitting place to conclude:
"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."
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