People With Disabilities Living In A Disabled World
© Erik Leipoldt PhDPhysical Disability Council of AustraliaAnnual ForumFremantleNovember 19-20, 2004
People with disabilities in a disabled world—threats and promises
There is an increasing awareness that the world that we live in is undergoing rapid environmental and social change. And it’s not good news. A warmer or colder world, changing economic fortunes, an aging population and fewer carers are only some examples. People with disabilities are inevitably more keenly affected by such changes. We should think about the effects on them. Not only for their sake but because disability is really shared by all of us. Therefore people with disabilities could be regarded as the ‘canary in the coal mine’—messengers of impending danger. But their experience can also point to ways of living well despite severe threats to our physical and mental wholeness.
Recently one of my certainties of life was swept away. It was one of these things that buttressed the walls of the building that is my body. A medication that I had been using successfully for many years in keeping at bay urinary tract infections—essential for people with spinal cord injury—was withdrawn from the market in August this year, but I had had no notice of that. All this only came to my notice as I needed to replenish my stock of it in October. No alternative medication had taken its place. My pharmacist told me that the raw materials were not available any more. The national distributor of this medication was not saying why. I promptly acquired an infection and those of you that are in the know appreciate what that can do to you. Like many people these days I am resistant to some heavy-duty antibiotics so a UTI can have serious consequences for me. This episode brought home to me how vulnerable people with disabilities are, especially in today’s political and economic climate with a declining natural environment to boot. Was ammonium chloride withdrawn because of a natural resource that was becoming unavailable—like oil and like water? Was it a market decision because there was no longer any profit in it? Did anybody check what consequences its withdrawal might have on people? Whatever the answers it is clear that the difference between living with a disability and perhaps not living at all can be determined by apparently small changes—in the environment or in the market place.
Those who are already more vulnerable and dependent on others more immediately feel these changes. For example, as Sydneysiders can attest from first-hand experience the weather is hotting up. Sydney had its hottest day in October since the early 1940’s. Global warming is a fact—in my book at least. The CSIRO has just released a frightening assessment of its impact in the Eastern states. How will we cope if things are going to be difficult for everyone? A heatwave in the summer of 2003 killed more than 15,000 people in Paris, France—mostly elderly people among them. Who knows how many people with disabilities? Buildings over there are less able to cope with hot weather than here in Australia, but here also, a faulty air-conditioner during hot weather can be a killer to people who have an impaired control of their body temperature, such as many spinally injured people and others experience. We live in times that are unprecedented in history. Even that least of all greenie organisations the Worldbank and the Pentagon have commissioned reports which put widespread environmental and social turmoil as a plausible scenario within a decade. The Pentagon report predicts extreme weather patterns, mass migrations and wars—possibly nuclear—between now friendly nations over scarce water, food and energy, arising from climate change. Parts of the Netherlands and Bangladesh would be submerged. How would anyone cope in that world, but especially so how would people with disabilities? How would people with disabilities here cope with mere widespread power shortages such as happened in California last year? Some of us need access to electricity to run the air conditioner, or ventilator, in a globally heated world in order to survive. Many people were killed in severe storms through the Caribbean and southern parts of North America. How many people with disability among them?
It focuses our attention, doesn’t it? Just when you might have sorted out the building access standards, a terrorist or a storm blows your building away… that is if it doesn’t get flooded, cooked or frozen first. These are just some examples. They are not the only developments that are worries for people with disabilities in a world, which is seeing the results of resource depletion, global warming and pollution. Socially too we live in stressful times. An ageing population with growing numbers of people with disability outstripping population growth is accompanied by higher needs for care, informally and formally, but also by a reduced availability of those who would do the caring. Low pay, inadequate conditions, has meant shortages in caring professions and a lowering of standards. All these developments in a world that has lost a sense of community and lives more by values that promote selfish individualistic consumerism than promote the common good—essential to a sustainable world.
Even the very efforts towards a sustainable world can be threats to the wellbeing and survival of people with disability. For people with disabilities there are dangerous points of convergence. For example ‘green’ values are often explained as those of interconnectedness and diversity, and as alternative to our dominant social values. But those are not necessarily the values that some of those same green advocates are applying to the issues raised by growing, and ageing populations and to us. Past Australian Greens candidate and influential philosopher Peter Singer is well known for his negative views about people with disability to the point where the lives of some animals are valued more highly than those of some people with intellectual disability. He would leave it to parents to decide whether a newborn with certain impairments should live. For another example Herman Daly, a World Bank economist and John Cobb, a philosopher-theologian are influential authors in the world sustainability movement. Euphemistically they advocate the use of individual choice for elderly people to terminate their lives should theirs become too onerous in the context of a burden that they represent. In their otherwise very inspirational work called For the common good they said: “In a world where population presses upon ecological limits, there are additional reasons to take these humane steps” (p.250). In other words, the same values of selfish individualism—those that underlie much of our current environmental and social problems—are also used to deal with some ‘problem populations’. The principle of individual choice is applied to the perceived burdens of an ageing, and growing population, one of the major threats to a world that is running out of resources. People with disabilities could be the new useless eaters—or burdens—in a society that spirals downward in individual competitiveness if we do not become clearer about the meaning of a sustainable world as one of regard for the growth potential in every individual human being. It seems clear then that people with disabilities are increasingly vulnerable in a world of rapid change. They are also highly vulnerable to some of the remedies that are advanced towards a sustainable world. The sustainability debate should tap into the positive social and developmental parts of human nature rather than into its dark side, that is one of fear of the dependent and vulnerable Other. Paradoxically, it can do so by connecting closely with the lives of people with disability.
All of the people with disabilities and leaders in disability movements in Australia and the Netherlands that I interviewed in 2000 perceived such threats as I have sketched for you. They described a society that is getting faster, harder and less caring. They saw declining, natural and social environments. Some thought legal euthanasia could in the future be misused in a profit-driven society and in its health system. At the same time most also thought that the future for people with disability would be better, mainly through technological innovation, rules and safeguards. But we tried technology, rules and safeguards and they have been found wanting.
But, are these threats to wellbeing and even to life, exclusive to people with disabilities? Of course not. And is there little we can do about them? I think people with disability could be seen as the canary down the coal mine. You know, miners used to carry canaries below ground because if the canary keeled over they knew that they had little time to get out themselves before the gas that killed the canary would kill them. Perhaps I am going too far here with animal analogies but similarly, seen in this light people with disabilities are for the human population the equivalent of the 1/3rd of frog species that have disappeared from the natural environment world-wide, because they are very sensitive to environmental changes. Restore the environment to enable frogs to live and you are returning to a healthy ecosystem for all. Restore society and the environment to enable people with disabilities to live flourishing lives and we have a sustainable world for everyone. Bio diversity within the natural environment and diversity among human populations is a plain necessity for sustainable community. Both are linked.
The truth is that a sustainable community needs all kinds of people and this is not mere rhetoric. The perspectives and experience of life lived with disability must be part of the sustainability debate if we want effective action towards a sustainable world. There are at least four reasons for our voice to be heard in the sustainability debate. First, the disability experience of heightened vulnerability and dependence is a useful magnification of the human condition. Dependence can be denied but not avoided in practice. This is because chief characteristics of disability, that is increased dependence on others and vulnerability are part of everyone’s experience. Who is not dependent and vulnerable when a new-born, a toddler, or when ill or frail aged? Second the resources that people who experience high dependence and vulnerability have found within themselves form a practical value framework for a sustainable world. This includes the resilience and personal wellbeing that many people with significant impairments have found in the midst of highly challenging circumstances. Third, just in numbers alone people with disabilities cannot be ignored. About one in five has a disability in Australia and, as the conference program identifies, one in three people knows someone with a disability, whether as a family member, friend, or workmate. Fourth any approaches towards a sustainable world should not have vulnerable people pay the cost. They are part of the solution not the problem. The only society that is sustainable is one where everyone is included. The values of interdependence that can arise from the disability experience apply to everyone.
People with disabilities often point to the environmental movement as something they can learn from in terms of lobbying but, in fact we have something that the environmentalist movement is much more in need of: practical ethical values towards living life well. Our unsustainable world is a disabled world, for much the same reasons that causes disability in people. First, it desires an unrealistic unlimited growth in material comforts while forgetting about the need for real growth within people. Secondly it treats people as if they are no more than selfishly motivated individual consumers while our true wellbeing is found in social pursuits of sharing with and giving of ourselves to others. The disability experience of potential for a flourishing life in the midst of difficult circumstances is a model for a sustainable world. Instead of policies that attempt to bring out that side of human nature that is selfish and fearful of disability and so-called imperfection, policies could focus on how to live well under difficult circumstances. Thus the disability experience is a contributor to life worth living, together, in a diverse and sustainable community.
A sustainability movement that is without the sort of value structure that includes every human being for their inherent worth by virtue of their potential for development, is a risk to us. But not including us is also a risk to the vision of a sustainable world because quite literally we represent life as it really is: uncertain, imperfect, and worth living. Life that is predictable, cosmetically preserved and fully controlled is not worth living—and unsustainable. Including people with disabilities fully in every aspect of life is therefore a constant and necessary reminder of those facts. A practical example would be the marrying of the disability-inspired concept of universal access design to sustainable housing and infrastructure. This would force planners to acknowledge human needs over a full lifetime, complete with periods of high dependence on others, as an indicator what true sustainability means. Generally a society, through free interaction with people with disabilities in all its areas of life, would be more mindful of its essential interactions with and dependence on others and on the environment. A sense of individual separateness would diminish. An increased sense of being part of the life of others and of the wider environment would likely result in a greater sense of responsibility towards them. That would be good for all of us.
Oh yes, I found an alternative to ammonium chloride. I pay more but it is better for me: Vitamin C.