“The only source of knowledge is experience”
"Disability" is part of normal life. Any society that accepts that will be a flourishing, sustainable community. Here is why and part of a guiding story towards such a future.
Things go wrong with bodies. We lose bits, break them, we get old and frail or we are born to live at the extreme ends of the full spectrum of human abilities. Really: disability is only a label to describe a condition that falls outside our range of desired attributes of being human. Just as we can see only a part of the full spectrum of light, we do not want to see death, decay, ageing, disability and disease as part of a normal, whole life experience. Which is why our society celebrates youth and buys anti-ageing creams. Adores physical beauty and perfection. And overvalues material wealth and intelligence.
Consequently, people who do not embody these ideals get directed to that same scrap heap that contains those parts of life that we do not like. It follows that such discarded people are excluded from everyday life’s activities, may experience severe abuse, and may easily become commodities in the multi-billion disability and “care” industries. It’s an industry following business practices, including tendering, competition, case management, and cost/benefit analyses. Such organisational attributes form barriers to meeting human needs because of their incongruence with the lived experience of what it is that makes us human.
Some 20% of Australians have some kind of disability, with a rate of 81% of it for over-85 year-olds. With a growing and ageing population and rising incidence, disability is certainly a topic of interest to all. Of course, no amount of money can buy our way out of attitudinally-caused disability. Only attitudinal change can! But how to change that?
Yes, appropriate aids and equipment and support services are needed and do cost money. But without a firm values footing in acceptance of those parts of life most of us deny, they can at times do more harm than good, and only represent more barriers to meeting human needs of people with disabilities.
Einstein once said : “You can never solve a problem on the level on which it was created.” The present proposal for a National Disability Insurance Scheme (NDIS) is an attempt at more money for the disability services industry but does not set out a new foundation upon which to build it. If allowed to go ahead “as is” it may actually entrench barriers to acceptance of disability. It treats the service and managerial technologies of case management, cost effectiveness, early intervention and marketplace competition as primary goods, rather than tools towards good lives. And the two are incongruent.
If our present dominant social values do not serve the interests of people with disabilities, then what will? And if we can find a new values base, will it be too far removed from mainstream ways of doing things, and therefore too hard to implement?
Disability experience as a guiding story
Well, let’s go to those values that do work well in the lives of people with people with disabilities. As we have seen, they must be relevant to all of us, as disability is part of all of our lives. Under truly supportive circumstances people with disabilities do find the same level of wellbeing that all of us crave. Human wellbeing has universal meaning and appeal, wherever you are right now in that spectrum of life experiences. By going to that body of knowledge we have a solid, evidence-based mandate for a working framework for dealing with disability. This is a much better mandate than the economic and medical models of wellbeing, of which we know that they do not work. And even the best human rights statements must still be enforced within the dominant social values that drive our culture presently – and which often work against them. They do not suffice without sustained action.
I propose that the best and only insurance policy against disability is in the sustained practice of an alternative value structure. One that we already know, deep down, to be true to our nature as inherently valuable, and ever-growing, relational beings.
A disability experience-based framework
As Kevin Rudd loves to say: “Everything is connected to everything else.” The proposed disability experience-based framework rests on acknowledgment of interdependence and an approach based on care. Now, part of the disability experience also includes being treated as objects of patronizing care but I hasten to add that that’s not what I mean here.
Life is characterized by care. To the degree that we pay attention to needs; the responsibilities we accept; the inherent value, meaning and dignity we see in each other, will we deal with our cares, our worries, and our impairments. But it starts with the fact of interdependence.
None of us are independent islands. We are all dependent beings. Dependent on our environment, goods and services others produce and, crucially, on assistance others provide to us when helpless as babies and toddlers, ill, or frail aged. Most of that care is given out of love, without expectations of (re)payment. That kind of care means the ongoing exercise of small acts of creativity, persistence, kindness, generosity, acceptance and flexibility in difficult circumstances, to mention only a few. No holidays, RDO’s or set lunch breaks. Without care none of us would exist. The way we survive and thrive is through co-operation and altruism. Essentially not through competition and self-interested exercise of choice in a world without limits – the dominant social values framework.
The experience of disability magnifies our reality of limits, within we must live, and reveals the possibility of living well in that reality. It reveals also that there are no boundaries between people with or without impairments, just a continuum of bodily and mental states. We all need each other and feel good in the mutual acts of care that interdependence involves. We live by virtue of relationships and our deepest needs are fulfilled within positive relations. Without that relational framework people and communities fall apart, and those who are most vulnerable feel the worst of its effects.
Relationships, Relationships, Relationships
As current Finance Minister Lindsay Tanner wrote, when in opposition:
Our malfunctioning human services are built on values that contain the seeds of the problem they want to fix. We could refashion disability service based on the solid ground of good relationships.
We are relational beings who wither outside caring relationships and become the best we can be within them. The disability experience is a magnifying glass held over the human condition and so it is that if we facilitated the best, supportive relationships, and welcoming communities for the most vulnerable of Australians, that our entire society would benefit. How? Well, the practice of care is the “secret sauce” in making healthy relationships and developing those personal qualities that make for fulfilled human beings. Just as Tanner did for relationships, it has been proposed as a political framework for governance at many levels.
Processes of care as a solid foundation
Joan Tronto’s framework of care emphasises coherence between the needs of people and the organisations that serve them. The processes of care arising from the lived experience of people reflect our true human nature, our core needs and values. Therefore any human service organisation whose services and structures are coherent with that experience are likely meeting real needs and doing the least harm. It firmly values the individual in community. The processes of care can only really be harnessed by organisations that model them – live them - in their organisational structure and processes.
The four processes of care are:
1) to pay proper attention to the person’s needs;
2) the taking of responsibility for meeting them;
3) exercising a competent approach and;
4) responsiveness in care as a mutual process.
An overarching frame work of care applied to core human needs is worth exploring as a 21st century approach to supporting people with disabilities and overhauling the existing disability services infrastructure. There is not enough space in this article to explore the full application of it in “insuring” people with disabilities against disabling attitudes.
Applying such a care framework is not Utopian as it is based in our daily human experience. And if care is really everyday commonsense, why should it be too difficult to implement in the way we govern our services? It’s about time. So, it’s all about choice when the chips are down: eliminating disability is as easy as changing our minds.
Tronto,J.C., 1995. Care as a basis for radical political judgments. Hypatia, Spring 1995 v10 n2 p141(9)