The Butterfly Upon the Road:

Disablement and Human Rights

Introduction

Good afternoon, oppressors -- and oppressed.

While in Mussolini's prisons Antonio Gramsci developed his theory of cultural hegemony. It says that the ascendancy of a class or group rests on its ability to translate its own worldview into a pervasive dominant ethos by shaping people's perceptions, cognitions, and preferences in such a way, that they accept their role in the existing order because they can neither see nor imagine any alternative.

We don't often think of people who can walk as being an oppressing class along the lines of Southern whites or European colonists or
Taliban men -- that's where hegemony comes in -- but they are. Like those other groups, people who can walk have settled comfortably into a belief that the world is the way it ought to be -- that it has to be like that, in fact --and that even the people who don't actually get to sit at
the top table understand that things are the way they are for a good reason. People who can't walk  would be deeply contented, if it wasn't for a few deluded agitators.

That's why the voice of people with disabilities has to be heard. We can feel acutely injustices that the dominant class of people without
disabilities would be inclined to overlook. In Kipling's words,

The toad beneath the harrow knows
Exactly where each tooth-point goes.
The butterfly upon the road
Preaches contentment to that toad.

In our society disabled people have been denigrated, medicalised, patronised, isolated and rendered dependent. The medicalisation of
disability, in particular, has associated disability with sickness and pathology in comparison to ablebodiedness as health and normality.
This has resulted in the social construction of disability as deviant, vulnerable and dependent, resulting in a focus on the impairment rather
than the person.

Human rights are universal

Should there be disability-specific human rights? Theoretically, human rights are not like propertyholders' rights to the fruits of the land, or
citizens' rights to heavy rubbish collection, or the Brisbane Lions' right to a home grand final - rights which are conferred by one set or another of rules made up by society, or a part of society, and which could be taken away if the rules change. Human rights are rights we all have, by virtue of being human, to those conditions and resources that are fundamental to life and dignity. They do not need to be specifically
granted, nor can they be taken away. They exist for each person, regardless of the attitudes or laws that govern a society.

Looked at one way, rights and rules which are universally formulated can perpetuate rather than undermine oppression simply because they
are deliberately blind to differences of race, culture, gender, age or disability.

Wait a moment. Blind to differences? That's a metaphor that has its own problems. If public policy is blind to the fact that someone is blind, doesn't this mean that organisations can get away with awkward steps, or even open trapdoors? Anatole France said that the law, in its majestic equality, forbade both rich and poor to beg, to steal bread, or to sleep under bridges. Does the majestic equality of the law mean that both walkers and wheelies are permitted to climb steps, navigate high curbs, and find their own way up on stage to the microphone? At this point we must back up slightly.

What is the norm?

Some years ago a friend of mine took a Melbourne University course called Feminist Law, and the first issue raised by the lecturer was the
name of the course. Why did the Handbook divide law into "Law" and "Feminist Law", rather than into 'Law' and 'Male Law'?
Women were a majority of the population - why weren't they the norm, and men the exceptions? The issue is how one conceptualises the
subject of the discourse.This sounds theoretical, but becomes very concrete when one thinks about, say, leave entitlements. If the male norm applies, leave will be provided for things like colds and flu that men share with women, but things like maternity leave look like special privileges. If the female norm applies, leave is provided for anything that takes people away from work - childbirth, child care, plus all of the other diseases and accidents that affect men. This means that males suffer from the disability of having fewer occasions to take such leave.

What it is all about, in fact, is a struggle to have the power to define reality. Are you real, are you the true essence of things and am I defined
only by my differences from you, or vice versa?

The word 'normal' covers a multitude of sins. After all, illness and disease make up a large part of all our actual lives. Illness is normal,
almost universal. A disease-free status is almost rare enough to be a pathological condition. In the Australian National Health Survey, 64% of males and 68% of females reported having one or more long-term health conditions (eyesight disorders, arthritis, hay fever, back troubles, asthma, hypertension, deafness, for example, or eczema). In people over 75 - and most of us hope to be, at some time in the future, over 75 -- this figure rose to 96%.

In fact, most people have a chronic illness at some stage. Seventy-five percent of Australians reported having taken health-related actions
(ranging from medication to hospitalisation) in the previous fortnight, Over fifteen per cent (15.6%) regarded themselves as having a disability and 11.5% regarded themselves as having a handicap. Nonetheless, 79% of those surveyed perceived their health to be good and only 4.5% thought they had poor health (ABS, 1991).

So the 'normal' is a purely theoretical construct, existing only in the mind; nobody in the real world is normal. It's a good thing, then, that
we have human rights, not normal rights, or none of us would qualify.
As Edgar Allan Poe says,

The lingering illness
Is finally past-
And the fever called "Living"
Is conquered at last.

Life is an illness, and its cure is death. There are two sorts of people in the world; those who admit they have disability, and those who are in
denial.

The rights of the individual

In Australia rights are generally thought of simply as things you can't be forbidden to do, actions that you can't be forbidden to take,
behaviours that you can adopt if you want to - and if you're able to under the conditions that prevail.

People with disabilities can be prevented from exercising their rights by laws, or by social norms, or by markets, or by architecture. If there are no ramps coming into the shop, that's the functional equivalent of saying people in wheelchairs may not enter, and that's something that
anti-discrimination laws can take account of; but if you're not able to push your own wheelchair up that ramp, you fall outside the boundaries
of right and in the rough ground of welfare.

As A.J. Liebling said, "Freedom of the press belongs to those who own one." Freedom of movement belongs to those who can use the transport infrastructure without assistance. But what am I saying? What is it with this 'without assistance'? The only person ever who could move around without any infrastructure was Superman, and even he ended up using a wheelchair in his last years.

What are roads, stations, airports, pavements, and traffic lights but mobility aids? The issue is not that some people can carry themselves
from Dandenong to Spencer Street without human aid and some people cannot, the issue is that we spend thousands of millions of dollars of
public money to move ninety percent of us from point to point. In fact, the point is that we spend comparatively meagre pennies to push access to the system down into the area of difference and difficulties and disability and diminishing returns.

We currently have normal rights, not human rights. We have rights as individuals, when no human being could survive for a week as an
individual if the structures of society did not provide for them.

Deviations from the norm

Our problem is that we notice differences, not constants. Anything that is always there is taken for granted, ignored, forgotten.

Let's look at one instance. It's illegal to deny access to people with disability, and this law extends to making it illegal to deny access by
having steps where they're not needed. The City of Melbourne is an Australian leader in it's progressive in its policies, and its Disability Action Plan has led to great advances such as the new regulations ensuring that all private dwellings have to be accessible. This same disability action plan prepared by the excellent MCC Disability Advisory Council has highlighted that in some areas of the City a massive 42% of the buildings are still wheelchair-inaccessible, and a high proportion of those could be fixed for two thousand dollars a time. Let's calculate the cost of getting a customer into a city shop. The transport infrastructure required is valued in billions, the grid of electricity and sewerage and telephones is valued in billions, the building itself and its stock and its human capital millions more, and the cost per head of each punter crossing the threshold is thus almost incalculable -- but all these are sunk costs, constant, forgotten and ignored.

The delivery and servicing of the normal customer is seen as free, and the two thousand dollars that it would cost to remove the steps and
provide accessibility is seen as the only expense. It's simply not the case that a normal customer is free and a customer with a disability
costs two thousand dollars. A normal customer costs, including society's sunk costs, about a million dollars, and a customer with a
disability costs one million two thousand dollars. Even this, though, is to concede too much. We are not yet thinking in terms of humans as being the true standard, The real situation is that an access and support system for humans costs one million two thousand dollars, while an access system designed for a smaller, privileged, subset of those humans costs two thousand dollars less. In this context a search for 'independence' for people with disabilities is futile and backward-looking. We all of us exist in a web of 'interdependence'.

It's the difference between the traditional approach, often referred to as the medical model, that locates the source of disability in the individual's supposed deficiency and personal incapacities when compared to 'normal' people, and the contrasting social model that sees disability as resulting from society's failure to adapt to the needs of all people. In the medical model a complaint, like a spinal injury, causes impairment, like an inability to control one's legs, which disables by leading to an inability to walk, and handicaps by giving the individual problems in travelling and holding down a job, et cetera. In this model the complaint is ultimately responsible for the handicap.

A social model of disability, on the other hand, focuses on the fact that so-called 'normal' human activities are structured by the general social
and economic environment, which is constructed by and in the interests of non-impaired people.

'Disability' is then defined as a form of oppression -- the disadvantages that are caused by our contemporary social organisation, one which
takes no or little account of people who have physical impairments and which thus excludes them from the mainstream of social activities. The term 'disability' represents a complex system of social restrictions imposed on certain people by a highly discriminatory society.

Human rights

The human race hasn't had much experience with human rights. In the past, rights have been special privileges, actually getting part of their
desirability from the fact that some people had them and some didn't. In the Southern United States before the 1960s whites voted and blacks didn't, and the poorest whites who had most to gain from solidarity were the most reluctant to accept change. However badly off they were, they thought, they could at least feel superior to someone. The same is of course true of Australia. "If everyone is somebody," Gilbert and Sullivan sang in the Gondoliers, "Then no-one's anybody!"

Australia, in particular, has come late to the notion of human rights. We come from the British tradition, where the rights of the free-born Englishman (and they did mean man) extended to the right to walk slowly down the pavement, by yourself, breathing through your nose,
and very little further.

The Rights of Man have excluded at different times and places as non-humans or sub-humans or quasi-humans or nearly-humans or part-
humans such groups as women, foreigners, homosexuals. slaves, blacks, vagabonds, madmen, Jews, Muslims, idiots, the propertyless, actors, children, gypsies, lepers, and heretics, among others. And many people today have a similar mental and emotional reservation when it comes to disability.

In Victoria the Department of Human Services carried out a recent survey that found that more than a third of the population are 'active avoiders', responding to people with disabilities with uncertainty and fear.

I know what they mean. As a woman with disabilities, I've felt it too. As I wrote in Just Passions -

"The most frightening part of being around people more disabled than me was that just looking at them flicked a little switch in my mind. They reminded me that further disability and illness and even death might be around the corner. Better not to know, better not to have to think about such awful human inevitabilities.Joining the disability rights movement meant that I too had to face the truth - to others I am disabled, a living prompt about life's imperfections. And this brought the realisation that (as with indigenous people) the disability movement needed to start a process of profound reconciliation in Australian society; every one of us - disabled or not - needed to come to terms with our own fear of people with disabilities, because this fear was based on our fear of ourselves - our own fragility and fallibility - and on the inevitability of aging, illness, disablement, and death."

Change

How, then, can we change this? Here I turn to my experience at the Victorian Health Promotion Foundation. When I started up that
organisation we began with a view that advertising alone would be able to change people's behaviours - that a strong media campaign could
deal tobacco a knockout blow.

After a while we found that it wasn't as simple as that. Smoking rates didn't fall as quickly as they should, particularly in the age groups whose bad habits worried us most. Then we moved to discourage smoking through environmental change via our sponsorships of sports groups - inducing the organisations we funded to go smoke-free, to provide salads at the table instead of battered savs, and to put up shadecloths. This had some effect, but VicHealth wasn't able to fund everybody, and so only some clubs made changes. After that we went
to the Government to persuade it to issue mandatory bans.

All three levels were necessary, and none of them was sufficient. Community and professional groups were built into a powerful coalition. Advertising campaigns while ostensibly directed at the public had the effect of persuading those who were recalcitrant in Government and opposition parties that the cause was popular - popular enough for them to come onside; they then legislated and regulated smoking restrictions - Governments intervened to make a smoke-free environment compulsory. There was a continuous feedback loop -- we made smoking difficult and expensive, so that fewer people smoked, so there was more support among policymakers for making smoking even more difficult and even more expensive. We set up a virtuous circle.

It is that kind of campaign - multicentred, opportunistic, indomitable, and unceasing - that is needed now in the field of disability. I would suggest we focus on access. The TAC created enormous controversy a number of years ago with its bold slogan "If you drink and drive, you're a bloody idiot". Now children say it reproachfully to their parents.

I want a government and a community with the courage to come up with an equally bloody good slogan - a slogan,
importantly, backed up with attitude, passion and a changed reality to access. After all, we've had years of soft squishy slogans trying to
persuade. And as Gough once said, It's time Perhaps our slogan could be' it's time'...... It's time for bloody access, capitalising on the
TAC slogan. I think this would be a real goer.

Of course slogans have to be backed up by coalitions of organisations of people with disabilities, and these need to be strengthened, extended, and resourced. Strongly and provocatively raising community awareness of the needs of people with disabilities will help focus the attention of policy makers on the physical, social, legal, and regulatory barriers which compound the challenges of disability; recruiting policymakers and politicians to the cause will enable us to introduce systemic changes, which will in turn increase community awareness.

Changes

What are these systemic changes? What changes in our laws, our culture, and our hearts are needed? We cannot look too far into the
future, because our descendants will inevitably have much wider views and much higher standards and will condemn us, as we condemned our own parents, for being timid, halfhearted, mired in prejudice, and unable to see the full implications of our propositions. Even so, we
should be able to see the next step, because other nations have taken it already.

At this point, I'd like to welcome the Australian Minister for Disabled People - I'd like to, that is, but I can't, because there isn't one, which is one of the ways we fall short of the UK, where Maria Eagle fills that Ministry. Perhaps because they have a Ministry devoted to the area,ut even then less powerful than the rather more robust regulations that exist in other countries such as France, Germany and Italy that require employers to recruit people with disabilities, and, failing this, to pay a contribution into a fund to promote employment for people with disabilities.

Rights based legislation at state and federal level has been integrally linked to human rights and citizenship in Canada, the Netherlands, the
Nordic countries and the UK. In these contexts, providing services and acessibility is seen less of a favour and more of a right. In Australia,
too, disability organisations are increasingly arguing that their rights should include rights to, and control over, care, welfare and other
services. This means that disabled user participation, and disabled service users' involvement in the planning and delivery of care, has to
become more deeply embedded into citizen's rights.

VCOSS might begin the effort by insisting that the Boards of its member organisations be at least half made up of their service users- well, let's compromise on a third, just as a transitional provision. Government and philanthropic grant makers could also decide to demand that a third of boards of all community service providers are service users before they will consider granting applications. In fact, VCOSS could again show leadership to its members by appointing a third of its board from service users.

The power of the group

Until recently, people with disabilities have inhabited a cultural, political and intellectual world from whose making they have been excluded and in which they have been relevant only as problems. We now know that people who are disabled by society's reaction to physical, intellectual and sensory impairment and to emotional distress have the right to assert control over their lives, and that we need to change the power relations that have become institutionalised between the person with the impairment and those who traditionally governed
the life of the disabled.

As people with disabilities, we must reclaim our ability to think and act for ourselves. Nothing about us without us!

The UN is now working on the drafting of an international convention on the rights of people with disabilities, and this has the potential to act
as a political catalyst and educational tool for the global disability community to bring about a change in the way disability rights are perceived. The Australian government's attitude to this convention has been somewhat half-hearted, but the process is continuing and it is hoped Australian disability organisations will be supported in the future in their work on this milestone.

More generally, our public agencies should provide support for representation and advocacy at the individual level, the systems level, and the governance level, including support for systems providing protection and advocacy and for self-advocacy training. Humanity, fundamentally good and moral society/ overcomes its resistance to change when confronted with a notion that it considers true, just and
universal. In the area of disability, however, there are unfortunately many people who regard rights simply as a list of social and legal concessions that they are required to make.In order to turn the tide, a concerted effort must be made to change the perception of disability rights so that they are viewed in the same way as women's rights, children's rights or racial minorities' rights. While
it is true that these groups still experience discrimination, and that they must still struggle continuously against hostile power structures, their
efforts to promote their rights as human rights have inspired a significant change in social attitudes and have increased the pressure on
decision-makers to recognise and consider their rights.

The social model approach demands an integrated society. This does not just mean integrating disabled people into a non-disabled world; it means redefining society according to the perspectives of all people, not just the non-disabled. We must make clear the difference between what we have now, which is able-bodied rights, and what we should have, which is human rights. Michael Berube, writing about his experience of being the father of a child with Down syndrome, says"A capacious and supple sense of what it is to be human is better
than a narrow and partial sense of what it is to be human, and the more participants we as a society can incorporate into the
deliberation of what it means to be human, the greater the chances that that deliberation will in fact be transformative in such a way
as to enhance our collective capacities to recognize each other as humans entitled to human dignity."

Let us begin transforming.