Courage in a brave new world: A disability perspective

Modern Western societies such as Australia highly value intelligence, independence, youth, physical beauty and agility, material wealth and enjoyment from physical pursuits such as travel, sex and sports. Self-determined, rational individual choices are supposed to deliver to us the best of what’s on offer. It is not surprising, therefore, that people who fall outside many, or all, of these values, such as many people who have disabilities and aged people, are the subject of much discrimination and abuse.

Dependency on others for sometimes very basic tasks makes many of us fear disability, our inevitably declining bodies and mental capacity as an unnecessary tragedy, an anomaly of nature – a curse from which science has not quite yet cured humanity. Our hopes and huge amounts of money are invested in science and technology for cures of all kinds of disabilities, diseases, and even from death itself. Genetic manipulation, embryonic and adult stem cell research, cloning, and other techniques are frequently reported as offering new glimmers of progress towards a Utopia of forever healthy, physically whole, happy and long-lived, perhaps immortal, people. Dr Philip Nitschke and New South Wales Premier Bob Carr, for instance, have built successful media circuses around their ‘careers’, using our fears of the human condition and the mirage of a brave new world, free from suffering. Carr has even caught on to the success of Nitschke’s workshops-of-the-willing and is having one of his own, promoting the embryonic stem-cell industry, with Christopher Reeve on his billboard.

Lisette Nigot, a Perth resident, was one of three elderly people who killed themselves recently after attending workshops conducted by Philip Nitschke. She killed herself just before her 80th birthday, has been portrayed as a successful and highly intelligent academic who had lived the good life of world travel and had rubbed shoulders with the famous in managing the Waldorf Astoria Hotel in New York. She was reported as having some minor health problems but essentially as still healthy. However, she did not see any possibility of good life beyond 80. Her suicide was reported as being prompted by a fear of decline and dependency on others as an undignified life.

The West Australian’s Editorial “Suicide asserts right to choice” (27/11/02) suggested that Ms. Nigot’s decision to suicide was a legitimate and brave assertion of her ‘right to choice’. She had “rejected old age and its potential trials and constraints”. As is usual in this kind of ‘debate’, the editorial set up any opposition to this ‘right’ as being mainly religiously motivated: “Suicide is often associated with despair, which in this context is defined as a loss of faith in a deity”. But it appears Ms. Nigot had lost faith in her own deities: Material Wealth, Individual Choice and Self-Determination, Independence, Intellectual and Physical Intactness and the Pleasures derived from these. These deities, however, appear to be no less illusory as a path to human happiness than many people in our secular age think religion is. The evidence of this illusion is in the news every day. Unprecedented material and technological progress, medical advances and opportunities for entertainment of every kind have not made us happier people. These developments have brought much good but, beyond a certain measure of them, our wellbeing has declined. Rising rates of depression, suicide, social isolation, decline in public trust as well as many environmental problems are symptoms of the failure of this dominant value system.

Contrary to our beliefs about disability, old age and dying, dependency on others does not need to lead to an undignified and unbearable life of suffering. There are many studies that demonstrate that people with significant disabilities experience a life satisfaction that is as good or better than that of the average population. Similar studies, some conducted over the time of an entire generation, demonstrate the same for elderly people. Other studies show that the closer one gets to dying, the less enthusiasm there is for hastening one’s own death.

How can this be explained? Well, human nature appears to be sociable after all and meaningful relationships and support, when embraced, create wellbeing. Without having developed empathy for one another in the act of caring for dependent and vulnerable others the human race would have gone the way of the dinosaurs a long time ago. Not only do we need others to survive but also we need others in order to grow and flourish as individual people and as communities. Virtues like kindness, persistence, courage, empathy, and sociability are developed in such relationships. As the origins of the word reflect, ‘courage’ does indeed come from the heart.

We must face it: none of us was born independent. We need others for the most basic support tasks when babies, when ill, and in frail age. Our stages of independence are only temporary and are based on other times when we were dependent and supported by others. When we acknowledge our interdependence as a fact of life we may come to view the world differently and accept both sides of the coin of life: independence and dependence, pleasure and pain, highs and lows, as the inevitable parts of a whole, rich life. Devalue one side of the coin and it becomes worthless: individual lives and communities lose their meaning and collapse.

Tragedy, therefore, is not so much contained in the lives of people who struggle with undeniably and tremendously difficult issues in their lives, such as pain, dependency and vulnerability. Real tragedy occurs when we deny our human nature by offering a ‘choice’ between inadequate social support and nothing less than cure or death. It is a tragedy when we applaud the ultimate celebration of one side of the coin only, leading to the ending of a human life because assistance from others is felt to be degrading.

When people ask for death their deepest motivations, including physical and mental pain, are often associated with a lack of relationships and social support. A society that emphasises escape from our human nature and abandons people to a ‘right’ to individual choice in response to suffering is not viable. We can use our self-determination to choose a different path. Why not use the positive experience of disabled, elderly and dying people as one such path?

If we do not acknowledge such experience as guiding stories to life worth living, Ms. Nigot’s example shows that it will only be a matter of time before the first Australians who have a disability will be given the ‘right’ to death by a society that does not welcome them. Since disability will always make up a significant part of the human condition, this is a concern for all of us.