“The only source of knowledge is experience”, Albert Einstein.
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.
Disability results from negative attitudes towards those who have an impairment of some sort. Like not being able to walk, or see, speak or understand the same as others. Negative social attitudes cause exclusion from employment and education, abuse and poverty. And these attitudes mostly come from unconscious fears about the imperfect nature of the bodies within which we have to live.
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 per cent of Australians have some kind of disability, with a rate of 81 per cent 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 patronising care but I hasten to add that that’s not what I mean here.