Australians with Disabilities and Social Inclusion: Getting on the Agenda

27/06/2008

by Fiona Smith
Chairperson
Victorian Equal Opportunity & Human Rights Commission
Social Inclusion Down Under

I would like to begin by acknowledging the traditional owners of the land that we are meeting on today, the people of the Kulin nation and pay my respects to their elders, traditions and customs. I would also like to begin by congratulating the Brotherhood of St. Laurence for this day of reflection on social inclusion and thanking them for the opportunity to highlight some of the issues involved for people with disabilities.

Today I want to talk about getting Australians with disabilities on the social inclusion agenda, as well as some key ideas for making this happen.

We have a tremendous capacity in Australia to make things happen: to punch above our weight and to excel in a way that may be a surprise to other larger nations. In the area of people with disabilities however, we are struggling. Despite some gains around physical access starting to happen; technological advances in aids and equipment and some important legislative protections against discrimination, we are yet to bring disability issues into the mainstream of social and economic thinking.

Having torn down some of the institutional walls that surrounded many people with disabilities, its time now to move on to a new era. It is time for a new vision of what is achievable.

To think about what needs achieving we first need to understand where we are at the moment.

Largely, people with disabilities are invisible from the mainstream political and economic agenda. People with disabilities have been colonised first by the health system, and now increasingly by the welfare model. It is a very narrow lens that is being applied to people with disabilities and one which still relies largely on thinking in terms of segregation, services and dependency. The social inclusion agenda offers real hope of being able to shift this paradigm.

In her 2004 Human Rights Oration for the Victorian Equal Opportunity and Human Rights Commission, Dr Rhonda Galbally put this baldly by stating, “We currently have normal rights not human rights”.

That is, without human impairments being recognised as needing adjustments to be made within in our society, within our economic markets, within our government institutions and by politicians, people with disabilities will only continue to have normal rights not human rights. Equal treatment doesn’t always result in equal opportunity, is another way of expressing this.

The reason for this state of affairs has been based on disability being regarded as “other” – there are people with disabilities, and then there are the rest of the community or the world.

A 2004 Victorian Department for Human Services survey confirmed this when it found that a third of the population were “active avoiders” by responding with uncertainty and fear to people with disabilities.

It is important to reflect on how liveable Australia is for someone with a disability in this environment. Interestingly, the liveability of where we live has recently been recognised as a key productivity and economic imperative by the Victorian Competition and Efficiency Commission in its report on liveability. The VCEC identifies common characteristics of a liveable place as: community strength and connectedness; economic strength; built infrastructure; social infrastructure; amenity of place; environment; citizenship; equity and human rights; participation; leadership and good governance; information; transport and innovation. I could not think of a better way of describing the breadth and nature of the elements involved in the paradigm shift that we need to consider for the social inclusion of people with disabilities. Each one of those common characteristics is an aid to seeing people as having whole of life needs, interests and rights and obligations and not just as service recipients or dependent persons.

I would like to tell you a story about a service I was involved in helping establish around 24 years ago to help illustrate this as well as the challenges. We set up one of Australia’s first attendant or personal care agencies controlled and directed by people using the service themselves. This kind of self-directed personal support for those who need it is still unfortunately all too uncommon. Many of us believed that with the ability to direct personal care the fullness of life would be within reach. The reality is that for most, the stigma attached to disability in finding a job; the high levels of discrimination in finding a job, inaccessible transport systems and the built environment, poor quality aid and equipment programs and the segregated limited nature of social, recreational and leisure opportunities, means that the service solution, whilst empowering, is only ever going to be one part of a whole suite of measures necessary for true inclusion to be realised.

These matters are of course of central importance to how successful the social inclusion agenda will be in achieving its goals, because we are not talking about an insubstantial group. One in five Australians has a disability and as the population ages Australians can increasingly expect to spend a substantial part of their life with some form of disability.

Statistics tell us that people with disabilities are not separate from the community, they are the community. Maryanne Diamond, the foundation CEO of the Australian Federation of Disability Organisations put it this way in 2005:

“ People with a disability are not “other”. We are you, in 5, 10, 20 or 30 years time.

Or it could be you tomorrow or the next day or next week if you have an accident or get sick.

Why is this important? Because making the community accessible is not about charity, its about self interest.”

Australia is not alone here. Recognising this, in 2007 the UN Convention on the Rights of Persons with Disabilities finally came to fruition. The basis for the new UN Convention is that, clearly, humans in all their forms are the true standard by which we need to judge the actions of society, governments and the private sector as well as, shape and implement human rights. The new Convention is intended to have an explicit social development dimension, with its articles recognising all rights, civil, cultural, economic, political and social. Importantly the articles also detail some action orientated interventions for countries to adopt. We are hopeful that the Australian Government will soon ratify this for the assistance it offers in guiding our thinking in realising social inclusion for Australians with disabilities.

At this point I want to emphasise my optimism about our capacity to change. Our achievements in other areas give me confidence that with leadership from people with disabilities themselves and you, we can shift our thinking; building in people with disabilities at the start of the new social inclusion agenda and not tacked on at the end.

Can I ask you to think about a number of disadvantage indicators such as: income poverty and unemployment levels; imprisonment levels; homelessness levels; violence against women; school retention rates; and social isolation. The list goes on and you will find people with disabilities up there at the most disadvantaged end. Yet, bewilderingly these issues which affect such a significant group are not front and centre in the dialogue and debates around priority setting for liveability; human rights and social inclusion.

Why do we find this so difficult to do? Is there more that we could do? What needs to happen to make an organisation like Australian Federation of Disability Organisations (with its two and a half staff) a household name just as Carers Australia might be; the ACF; the Cancer Council or Alzheimer’s Australia? We need to get beyond viewing improvements in the social and economic conditions of Australians with disabilities as a matter to be solved by service systems and professional expertise and move to recognise the legitimacy of people with disabilities to help shape social inclusion down under. In the UK where I’d have to say they are streets ahead in using human rights frameworks for identifying barriers to inclusion, employment rates of people with disabilities have gone up in recent years whereas in Australia unemployment rates remain high despite our economic boom time. In the public sector employment rates have actually declined. The OECD has even identified our record as a problem.

Having pointed this out, it remains important that the social inclusion agenda not just focus on economic and employment issues because of course life is meant to be richer, fuller, more socially connected and enjoyable than a job and an income, notwithstanding the dignity and material comfort that might bring. To highlight this point let me draw your attention to a number of concepts that Professor Maria Rioux of York University, Canada highlights as ways in which exclusion works for people with disabilities:

· Best interests– rather than basic civil and political rights centred around an individual’s right to freedom, respect, equality and dignity.

· Safety and protection – rather than support to take risks

· Dependency – rather than recognising barriers that need dismantling

· Fixing the person – not the environment. This is where diversity is abandoned in favour of normalcy

· Something is better than nothing – this is how segregation and segregated programs are justified.

· Lack of national measures of wellbeing and quality of life for Australians with disabilities

Now, I know you think I am exaggerating the magnitude of the shift required. So let me tell you about me having my hair cut a couple of weeks ago. I entered the hairdressers with my $450 one step ramp in order to get into the premises. I then sat down to not my usual hairdresser but to a young man named Daniel approximately twenty five years of age. As my friend bought into me a small quiche to eat Daniel was firstly a little panicked as my friend was not staying with me and then asked me how long she had been “my minder”.

If you are still not convinced of the magnitude of the task of building in and not tacking on people with disabilities in the planning, design, implementation and evaluation of social inclusion down under, its salutary to realise the new Social Inclusion Board, made up of a terrific combination of people by the way, it is without a social and/or economic thinker with a disability. Quite frankly that is simply astounding and it has shocked even me!

There is a catch cry in the disability rights movement, “nothing about us without us”. It is clear however, that to progress social inclusion we need to move to “Nothing Without Us”. Whether its a community group lobbying for or against building a pipeline from Yea to Melbourne redesigning; Australia’s tax system; considering the core provisions of Australia’s new IR system; or addressing locational or postcode disadvantage. We cannot continue to allow the issues relevant to people with disabilities to remain the domain only of service delivery departments and separatist strategies.

Shifting the Agenda from servicing basic needs to rights based planning

This means dismantling barriers to inclusion and tackling the disabling aspects of our environment. This will need to be as far reaching as possible. I’d like to propose some key principles to guide this, underpinned by the new UN Convention.

Empowerment and Participation

Empowerment and participation have to be two of the most important principal to underpin social inclusion for people with disabilities. This means a new deal not only around self directed supports but how people are included in debates and discussions at a local and community level, as well as state and national levels. The right to participate in public life means little without appropriate adjustments being made to all these processes for people with disabilities. This shouldn’t just focus on disability advocacy organisations and but also how participation and empowerment occurs across issues such as sustainability; local recreational and sporting organisations; local educational arrangements; public transport planning within an area, or, putting in place a new childcare hub within a area.

Universal Design and Accessibility

Universal design needs to shape all policy and program development as well as infrastructure and service delivery support. Reinforcing this, accessibility is a Guiding Principle under the new UN Convention. I’m not just talking here about physically getting in and out of public buildings. It encompasses a broad range of information and communication technologies that are becoming increasingly important in how people connect with one another. It relates to information provision, transport systems, hospitals, clinics, workplace design and urban planning. It relates to how the job network is reshaped so that not only specialist expertise and support is available to a person but the full range of the networked capability

In Victoria we have the beginnings of a significant movement advocating for universal accessibly designed housing to both meet the demands of ageing population and the needs of younger people with disabilities. This group believes that universal accessible housing can be realised by mandating no cost/low cost options in regulations. The Commission supports this position.

We are seeing good attempts by a number of local government and neighbourhood houses to involve people with disabilities but we still need a huge boost in the effort. With some notable exceptions around Australia, recreation, cultural events and activities are not yet inclusive. This is unsustainable given the shift to increasing individualism and less planned social and family activities that social researchers such as Roy Morgan comment upon. This trend is and will continue to have a compounding effect for people who still encounter significant levels of stigma, discrimination and therefore isolation.

Continuing on this theme, I note the Rudd Government’s welcomed IR changes propose to recognise a worker’s ability to request part time work to fulfil unpaid carer and family responsibilities. While this will be a really important change for the better, is this a long term solution given the ageing of our population and incidence of disability?

· Can we afford the ill health and social isolation that comes from the demanding role of an unpaid carer as well as the lack of empowerment that often occurs for the person receiving that support?

· Can we afford the loss of economic capacity for the unpaid carer?

· Can people afford to leave work to be unpaid carers?

Accountability

Accountability is another principle that should guide social inclusion down under when it comes to people with disabilities.

In this regard, I particularly welcome the initiatives by the Rudd government around the development of a National Mental Health and Disability Employment Strategy and its initial work on the development of a National Disability Strategy across the whole of government. Transparency is of course a key part of accountability and we therefore look to social inclusion agenda to articulate how people with disability claims and interests will be realised through its important work.

Equality

In the past lodging a discrimination complaint has been seen as a useful accountability mechanism. While the ability to make an individual complaint is still an important redress to maintain, we can no longer rely on the current generation of anti discrimination laws to tackle the structural and attitudinal barriers that need to be dismantled for true social inclusion of people with disabilities. These laws rely too heavily on empowered individuals with time money and resource to pursue individual injustices. This fact was recognised by the Productivity Commission itself in its Report on the Disability Discrimination Act in 2004. It called for a new generation of equality laws that look at positive duties for ensuring the elimination of discrimination. This is certainly the position being adopted by the Commission I represent across all human attribute area, in responding to the Victorian Governments current review of the Equal Opportunity Act in this state. I would hope that the National Disability Strategy being considered by the Rudd government under Bill Shorten’s guidance comes to grips with this issue more broadly. We advocate a positive duty to make reasonable adjustments, that embraces the public sector, including local government, as well as the private sectors in relation to both goods, services and employment.

Benchmarking and measurement

We need social research and trend analysis to incorporate people with disabilities against all the indicators and in particular quality of life and well-being. Without this, exclusion from the social inclusion agenda is going to be difficult to remedy in any sustainable way. We need to measure and monitor in a more focused way the employment of people with disabilities. We need this not only at a national aggregated level but at a regional and local level to identify where the gap needs to be bridged, whether it involves education, transport, employment support services, employer attitudes or otherwise. We need to report on and explicitly measure access to transport in all its forms; building accessibility; ICT usage; and the social contacts and connections that people have to really measure social inclusion. We need to set targets around and measure whether we can achieve declining rates of people with acquired injury, mental illness, or intellectual disability in our criminal justice system. To highlight this need, it is only in the last few years that, to my knowledge in my own state, the incidence of disability within our prison system is starting to become apparent.

All of these matters are areas for a rich vein of academic, social research and social policy activity. In arguing the case for this, can I also please highlight how important it is that people with disabilities themselves be engaged with you on this and be nurtured with this capability as well.

I am optimistic that if the social inclusion agenda were to embrace these principles: Empowerment and Participation, Universal Design and Accessibility, Accountability, Equality and Benchmarking and Evaluation, underpinned by the recognition of people with disabilities human rights, the UN Convention on the Rights of Persons with Disabilities can be effectively implemented in Australia.

Thank you.