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." Continue reading