A Sustainable World Through Disability Experience?

Disability, interdependence and community

© Erik Leipoldt PhD

Keynote address

Physical Disability Council of AustraliaAnnual ForumFremantle

November 19-20, 2004

Published in Interaction, (2005),18,3,29-34And in Journaal voor Humanistiek,

Disability, interdependence and community

The disability movement has put much effort into having people with disabilities accepted as citizens with rights equal to those of others: including rights to access to premises, to education, and to be a valued individual. But where are we after

almost 25 years of IYDP? Have we “empowered ourselves and others”? And should we push for equity in a society whose values of individualistic competition and consumerism are root causes for much of our disadvantage and exclusion? It is perhaps time to look back and acknowledge the past. But also have a keen eye for the present and renew our vision for a better future. Are goals of individual independence and autonomy, enshrined in rules and standards, part of a sustainable vision for the disability movement? I will explore such questions and suggest a vision and strategies that may allow us to go forward from here. I want to emphasise interdependence over independence; people over consumers; and connectedness over separateness. Such a different vision may reinvigorate the disability movement as a contributor to and advocate for genuine community where diversity is the breath of a good life for all citizens.

First of all, I am honoured to speak at this national forum of the PDCA and I thank you for this opportunity to do so.

I want to start with a short story told to me by a fellow who had quadriplegia, similar in type to mine. I think of his story as not just his but as our story—the story of people who have disabilities. He was pushing his wheelchair along a busy Perth city footpath. And as those who push their wheelchairs know, the camber on most footpaths can be a real killer. You’re always fighting being pulled off the path, into the gutter. Well, the camber of this path was such indeed that he lost control, veered to the kerb, stopped just in time and just balanced there precariously with one wheel overhanging the gutter. For him it was the equivalent to one of those cliff-hanger scenes in the movies—you know, where a car is dangerously perched over an abyss and the people inside don’t dare to breathe in case the car overbalances. Well, that’s what it was like for him. A fall out onto the road could have caused serious injury to him. Movie watchers would be on the edge of their seats, almost physically reaching out to stop the car going over the edge. But in his case the shoppers kept shopping and the businessmen kept going on about their business, leaving him hanging there. Until, after some time an elderly lady stepped off the path, walked around in front of him and said politely, ignoring the obvious awkwardness of his situation: “Excuse me Sir, but are you alright?” “No”, he croaked breathlessly, “help—pull me back”. She did and so, thankfully, he could continue on his journey.

I am telling you this story as I want to put out some challenges to our ways of thinking—ways of thinking about disability, about the place of people with disability in the world and what the disability movement can do about that.

The lady may as well have asked the question that the passers-by may have taken for granted: “Are you OK there while you are exercising your right to self determination and choice whether to fall off the kerb or not—and we exercise our choice about whether to assist you?” Or, perhaps they did not stop to wonder about his situation at all.

As the story indicates, people have become disconnected and as a result feel less responsibility towards each other. Our society values people most in their roles of consumers and producers of goods and services. The values that those roles are based on emphasise individual self-interest. They involve a belief in competition as the route towards material gain, where material gain is held to be the source of our wellbeing. Our society celebrates those attributes that are thought to enhance such competitiveness: such as health, wealth, physical beauty and intelligence. If any person does not possess many or any of such attributes, and consequently looks and behaves very differently to such ideals, they embody everything that is thought of as bad about life. People with disabilities thus can arouse fears in others about the possibility that life is not perfect after all, that they too are fragile and mortal. They may then be ignored or become the subjects of efforts of segregation, of cure or of elimination. We see some of those fears played out in debates about euthanasia, stem cell research, genetic modification, and abortion. Too often people with disabilities are still merely physically a part of this world and the world often thinks it can, or even should, do without them.

The position of people with disabilities is at best as shaky as ever. While tremendous effort has gone into accessible travel, buildings, education and participation in the workforce, services of many kinds, including legislation to achieve these, all this is at risk. It’s at risk because these achievements exist by the grace of those who are in power and who subscribe to the individualistic social values of self-interest that exclude us. And I don’t have to tell you that besides keeping what we have gained, much more remains to be done.

The achievements in access, education, employment are largely buttressed by law and by money—and through a tolerance of us as the Other. It remains to be seen how strong our community’s commitment is towards people with disabilities in a political climate where escalating public policies of individual wealth maximisation and safety from undesirable ‘others’, are directly at odds with the support of dependent and vulnerable people. We must acknowledge historically unprecedented levels of public money applied to disability. But what do we think will happen in a near future when the dollars now earmarked to the so-called ‘burden of disease’—associated with a disproportionally growing aged and disabled population—will be eyed by a younger generation? Power is only ever borrowed so that younger generation will inevitably obtain its own political and economic power. If we do not have their genuine commitment to our welfare I think our future is predictable.

After all what has that generation learned from us? More than ever our society is about being “relaxed and comfortable” while politicians have us wage a permanent war on terror and on illegal immigrants. It’s a society where public trust and commitment to others—essential to our wellbeing—have been rolled and fear is a prime motivator in deciding how to live. Closely allied to these insecurities and fears is fear of imperfection, discomfort, dependence and vulnerability as this is embodied by people with disabilities. This situation spells grave risk to us.

So it does not make sense to put faith in those same values that cause our exclusion. Yet that is what much of the disability agenda still seems to be about. In part this is understandable as pursuits of rights to participation, to autonomy, empowerment and choice have historically been the bread and butter of our movement and we very much needed to raise them. But have we gone too far and are we still effective using this framework? We have even called ourselves consumers in order to achieve equal status, except that in many respects of course we are denied the wherewithal and real choices to fit that role.

As a minor example of such emasculated consumerism I contacted the hospital—a place where patients are now customers—for my usual stock-up order of medical supplies. I asked for a change of product because it had spectacularly failed me lately. “But you have never complained about them before. I have already ordered your brand in” she replied—“for the next six months to fit in with the hospital’s new budget cycle”. I could see it now, my house filled with boxes: “You want a seat? Just pull up a box of medical supplies. I have no room for chairs”. I was told that I must first make an appointment to discuss a change, involving a 70km roundtrip—but then what else would I be doing with my time as a disabled person anyway? When I incredulously said that I had now told her what the problem was over the phone this woman who had known me since 1978 rebutted: “but I cannot just change orders because any Tom, Dick or Harry requests it” I was flabbergasted. Disconnection, distance, bureaucracy…

So who wants to be a consumer anyway? Consumers are diminished human beings, stripped of the dignity that comes from being valued for one’s individual potential to develop. But in our lobbying, funding submissions and on advisory councils we are often seduced into using the language of the dominant culture of choice and self interest. That culture has straight-jacketed needs of people with disabilities within purchaser-provider- and business models, and moulded them to the perimeters of corporate plans. Cost-cutting, bean counting and even profit making have increasingly become part of human service. We are not sufficiently challenging this culture as directly counter to our interests. Merely calling for more rights and more money from that culture’s elected leadership is not going to do it. And we are not really challenging the big bioethical issues, some linked to powerful corporate interests, that threaten a new eugenics. Weakening us further, much of our organisational funding comes from those same governments that operate on the values that exclude us. (The most recent example of this vulnerability is the de-funding of a Perth Citizen Advocacy group, apparently for doing their job.) We must also acknowledge that our dominant discourse of autonomy and rights excludes those people with the most significant cognitive disabilities and for whom empowerment is meaningless. A strong disability movement needs solidarity across such divisions.

This society is about winners and losers. If the winners are per definition always the powerful, the fast, the beautiful and the rich then most people with disabilities will always remain behind the 8-ball. Obviously, no amount of legislation, empowerment or rights to choice could save the man in our story. The assistance he needed cannot be compelled. Such assistance depends on a genuine feeling of connection between people and rights legislation by itself cannot bring this about.

As appears to be the case with the world we live in, the place of people with disabilities in society is at a crossroads, as is the disability movement. I suggest that we honour the disability movement’s many achievements, take stock of their effectiveness in a rapidly changing world and build on them. I propose a renewal of the disability movement. But unlike the federal opposition’s response to their recent election loss I do not suggest that we fall in line with the apparent winners. But what values then do we use—values that can apply to the full spectrum of people with disabilities? Well, simply enough I’d suggest we use our own disability experience—and push that agenda.

There is a strong body of research that shows that most people who have significant impairments report a wellbeing or life satisfaction that is equal to, or even better than that of the general population. This goes against public expectations of life with disability as miserable—to be cured if possible or reason enough for abortion or euthanasia. Why is this so? It’s relationships and the disability experience of interdependence. The primary source of our wellbeing is the quality of our relationships. This is true for people with disabilities as it is for anyone. I call it the disability experience of interdependence. It is simple, briefly we are all particularly vulnerable and dependent at various times in our lives. Just think of newborn babies, toddlers, or when we are ill or in frail old age. We would not survive and develop without unconditional love and assistance from others at those times. But many people with disability are often greatly dependent on others for fundamental and intimate needs, including dressing, showering and toileting—all of the time. But by consciously developing mutual, committed relationships these people transcended negative experience of dependence and could find life satisfaction. In my own research among 20 people with quadriplegia in the Netherlands and in Australia my participants described the following process: at some point they accepted their impairment as a fact as a conscious choice. Next they actively reached out to their carers to improve their circumstances. In the process they gained interpersonal qualities and changed themselves in to more sociable human beings than they felt they were pre-injury. Their transformation, or growth, within their now deeper relationships became their source of wellbeing under challenging circumstances. Their impairment had not gone but their experience of disability had changed. Dependence on those with whom you have trusted relationship is no longer a problem—even if they assist with the most intimate of tasks. Their vulnerability to ill-effects of disability had been reduced. As one participant said:It is possible that people will discover that particularly people with a disability have gained a certain wisdom that society needs: that people have to learn to live with the unknown; with the fact that any moment of the day anything can happen, whereby life is changed completely. (Leipoldt, 2003, p.224).

In overcoming situations most people fear and in achieving a rewarding sense of life satisfaction all they had done was to acknowledge life as it is: imperfect, unpredictable and dependent on others. It was just that their extreme experience of dependence and vulnerability had pushed them with their noses on that which makes life worth living—committed relationships. This is so for anyone. What helps us lead lives, well worth living, is the expression of those social values in people that make them supportive—the other side of the coin to individual self-interest. This committed interaction is the meaning of interdependence. It calls forth the best in us.

I stress that I am not suggesting that people with disabilities are saints, heroes or stoic victims or that disability is merely something that ought to be transcended by the individual as their private tragedy. To the contrary, I am saying “anything about us is about all of us”. Anyone of us is subject to disability—it forms part of a whole life. Improving the experience of disability depends on a social model that recognises that first and foremost our wellbeing lies in good social relations. Presently people with disabilities who are not productive in the economy receive the trickle-down crumbs from the full table of our wealthy nation, as their safety net. A society based on the values of committed relationship would support each person’s human needs and interests out of a sense of inherent equal worth based on each person’s capacity for development.

Using our own experience of interdependence in our activism embeds our needs within universal human needs and interests. No more separatism, apartheid or special needs. Community is enriched by the diversity of the full presence of all kinds of people, people with disability among them. A genuine community—a civil society—a sustainable world—is not possible without them.

Unrealistic? Utopian thinking you say? This is what author and Federal Parliamentarian Lindsay Tanner has to say about relationship as a basis for broad social and economic policy:

The depth and quality of our human relationships determines the strength of our society and the quality of our lives. It’s time to put relationships at the centre of the political debate. We can reignite the hope that is so vital to social and economic progress, and heal the divisions crippling our efforts to build a more cohesive and inclusive society. Building stronger relationships is the key to creating a better society. (Tanner,L., 2003. Crowded lives. Australia: Pluto Press, p.111)

Of course the world in the interdependent view is not Paradise on earth. Disability, hardship and difficulty will not be absent. We will just be better at surfing the wave rather than be wiped out by it. And Tanner is not alone in his sentiments. For instance important streams within feminist thought emphasise social policy around human dependence and environmentalists value social and bio diversity. And emerging think tanks such as the Australia Institute, The Australian Collaboration and WA Collaboration base their work on interconnectedness. We could add value to our message and gain strength in co-operation with such groups and they would benefit from our focus on what life is about at its deepest levels.

Undoubtedly this is a difficult task. Take for a start the difficulties in talking about dependence and vulnerability as something to be acknowledged as part of a whole and flourishing life. Of course this is rejected knowledge in a world that fears these states. For good reasons the disability movement has itself been silent on such topics. You’d be a wimp to even mention them. But I believe that the practical agenda of our experience is one that may lead to a sustainable society where respect for diversity means something: that is, full engagement with all aspects that make up life and with all those who are in it.

What does this mean in practice? Briefly, I see four broad categories that would identify a disability movement that were based on interdependence. Firstly it would use the common human denominator of relationships in framing its vision of people with disability as integral to a civil society. Secondly it would strengthen alliances among the like-minded, both internal and external to the disability movement. This would mean alliances across disability labels and with other social groups that put relationship central. It would also mean supporting and strengthening those parts of the disability movement and services that already genuinely focus on relationship. Thirdly it would emphasise relationship and connection in its own language and in its organisational structure. The latter would feature diverse funding sources and networks leaning away from one-dimensional funding sources and hierarchical models. Fourthly it could put greater effort into engaging with the difficult bio-ethical issues that go to the heart of our existence. That’s because these are precisely the issues where dependency and vulnerability loom large.

In conclusion, the times seem ripe for us to reorient ourselves to rapidly changing circumstances. More than ever the world is in need of the kind of resilience that comes from acknowledgment of the human condition as involving dependence and vulnerability. The knowledge of interdependence involves that of knowing how to live well with limits, in relationship to others and our environment. The disability experience is rich in such knowledge. Accepting people with disabilities as integral to sustainable community would be the most important safeguard that we could achieve in our turbulent world. The disability movement possesses some hard-won foundations upon which it can build and renew itself, along the lines of the disability experience of interdependence. It could realign the disability agenda with that which makes us all potentially more fully human. We have to be the change we’d like to see. In a word, that means drawing on our experience of relationship. Our man in the cliff hanger story at least would agree that there is much power in that.

Thank you.

Leipoldt, E.A. (2003). Good life in the balance: a cross-national study of Dutch and Australian disability perspectives on euthanasia and physician-assisted suicide. PhD Thesis. Perth: Australia. Edith Cowan University.

Tanner,L.(2003). Crowded lives. Australia: Pluto Press, p.111