Rights or Social Investment?

The Politics of Disabilities

Closing Plenary Address 

Australian Society for the Study of Intellectual Disability

Griffith University, 9 September, 2000

Peter Botsman

I want to start my remarks about this perplexing topic by talking about the general politics of social welfare and disability.

At the moment in Australia, in Europe, and the United States, we are seeing a battle between two different strategies for achieving better outcomes for people who are disadvantaged within contemporary society.

The first model which I believe we have inherited from United States is a "rights" model.  The second model is developing because of the breakdown of the traditional social welfare state in Europe and Australia.  I would describe this as a new social investment model. 

The model you judge to be most useful in the battle to win support for people with intellectual disabilities will also in my view affect our judgement about whether we should be creating a general disability movement or whether we need to pay particular attention to critical groupings of people with disabilities and to individual needs.

The rights strategy derives from the US civil rights movement and the spectacular successes of the protest movements of the 1960s.  The idea is, if I can be very concise, to win through a concept of rights, enshrine it in the highest law of the land and then go about advocating its implementation.  The rights strategy requires a national network of interests and effort to win support across a society.  In the United States, African Americans in the civil rights movement are the best representative of what can be achieved but also of the limitations of the rights base strategy. There have been spectacular successes, but forty years after Martin Luther King made his famous protests in the south of America, the minds of many Americans remained prejudiced, and there are still more black Americans in jail than graduate each year from high school. We may also think of the strengths and weaknesses of our own indigenous tent embassy in Australia and of the recent speeches by Noel Pearson on the need to get back down to specific needs and investments for indigenous Australians.

A successful rights strategy requires that a mass movement can be organised.  In the end you are seeking to create a majority ideology within the mainstream political institutions of the country.  I think that it is also a matter of convincing the vast majority of citizens to believe in the ideology of what you are advocating.  But this is very different from achieving real concrete action on the ground.  The danger is that by achieving a symbolic victory fundamental social and economic problems can remain and be overlooked.

If the disabilities movement were to adopt a rights based strategy of action, then it would make sense for the general disabilities movement and people within the intellectual disability movement to join hands to advocate a common position of rights for people with disabilities. I think we would all like this to occur.  I have heard many people argue that if only the various legislative acts within our society had enshrined within them a strong statement of rights for people with disabilities then a great victory would be won. I agree, but getting change on the ground requires a similar commitment and a different kind of action.

Rights must be backed up with resources, support, financial muscle, commitment, understanding, a sense of community ownership, creativity and thought.  Unfortunately you cannot put these things into a piece of rights based legislation.  Nor can you take away the chronic level of under spending on disabilities in a place like Queensland.  I fear if we were to solely advocate a rights based strategy then we would may win the rights without the resources.  This is clearly starting to occur in places like schools.  Integration is a strategy that is advocate by many well intentioned educational administrators and politicians, but the reality, at the cutting edge of the school, is that people with disabilities face an extraordinary fight that is not only about getting resources, it is also about educating people and designing new programs that have never been designed before.

This is where the second strategy comes into play.  We need a new model of social investment which ensures that the particular needs of people are met. The new social investment strategy, which I call in short hand "the enabling state strategy" is about restructuring the $A180 billion social wage budget to achieve more effective outcomes in a changing world. Here its my view that we  need to be more carefully understanding and advocating for solutions to the particular needs of people with intellectual disability or a specific disability of some kind.  In other words we need the strongest possible advocacy and understanding of not only areas of disability but of the individual life plans of each person with the disability. We need to create a movement that will advocate for every person with a disability, an achievable life plan, and in this I think we need to go beyond a model of generalisable rights and towards concepts of how we can invest in solutions that will provide tailored community budgets that put people with disabilities in control of spending, management and resource allocation that is available.

The rights model and the idea of tailoring social investment around individuals over the course of their life requires two different kinds of commitment.  Around Australia, in so many ways, the disabilities movement is leading the community to think about new ways of investing public money.  This is surely borne out of the fact that of all of our social areas of disadvantage I think, especially in Queensland, people with disabilities are the hardest done by in terms of government investment. So it hasn't been a matter of choice but of necessity.

But, with all its limitations, I think the most productive work is being done around new forms of social investment for people with disabilities. 

In my mind the great success of the Para Olympics in publicising the ambitions and aspirations of people with disabilities and the new effort to redesign and increase public investment in people with disabilities go hand in hand.  There are aspects of this model which are difficult and imperfect.  Every person with a disability cannot be a Para Olympian and we still need to implement some strong concepts of rights across all legislation in our society, but I do not see a new civil rights movement springing up and therefore I believe that it is important for people with intellectual disability to work hard to differentiate the problems and issues they face both as individuals and as communities with similar interests.  There is a common solidarity with all people who have a disability but at the moment the most productive form that can take, is support and understanding for the particular needs of individuals and groups. That is why I think we should insist upon the need for separate policies on different areas of disability and on distinct life strategies, community support mechanisms and infrastructure for each person with a disability. In this regard I think there are aspects of the concept of intellectual disability that are valid and should be respected as of a particular nature and comprising particular needs and supports.

Focus of Action

So that is my political judgment the moment, but I want to emphasise it is a broad political judgment.  Now let me do what Paul Keating used to do when he wanted to change the focus of the debate: 'let me throw the switch to vaudeville'.  An important corollary to this question of a general disability policy, or a policy focusing on intellectual disability is that we have to make judgments about which area of politics is most important for people with intellectual  disabilities at this moment in time.  Where do we invest our energy in order to get the best results for the people we are supporting?

I have now had the fortune, or misfortune, of working with all levels of government in Australia through one of the mainstream political parties in Australia, through policy units, ministerial advisers and the bureaucracy.  Through all of this I have been educated about the game of government.  I believe one of the worst things you can do is to start advocating for people with intellectual disabilities where a government has traditionally wanted you to advocate it from ie government committees, councils, consultative groups, bureaucratic representatives etc. These processes take a great amount of time for very few results. I have known a number of people who have worked on committees for years and I think it becomes a form of therapy rather than a means of action. Others I have known have slowly lost touch with those they are advocating for and representing.

My personal view now is that the most effective place to be an advocate is at the level of practical, immediate action.  In other words start from where you are not where government or the professionals want you to be.  Start with trying to achieve the most urgent need or goal; start with the your own view of where the priorities and unmet needs are and make governments and bureaucracies come to you as the experts.  This is not easy but, the point of the exercise is to define the way governments and professionals respond and the form of action and the must be taken rather than the other way around.

As I was sitting outside I was flicking through last years "Sharing the Road in 1999"papers and I came across Rae Thomson's wonderfully titled: "How professionalism can weaken, if not destroy community, and what you can do about it". The point of 'taking action from where you are' is to break through the disempowering process that often occurs when the professions, bureaucrats and politics get together.  Frequently if you are on a committee you are there simply tick off or validate processes and decisions that professionals and the political process have already pre-ordained.  By the most important things we have to do is to create a new politics about the clearest, most direct, practical actions that have to be taken to ensure that every person with an intellectual disability has a whole of life, lifelong strategy that is supported with the highest quality resources and supports.

Community and Alliance Building

Now I'm flicking the switch back.  Once you take this political perspective, of 'starting where you are'  it is surprising how alliances spring up between people with very different disabilities, and not just people with disabilities, but points of alliance begin to emerge with other communities and individuals.  In my work with Families in Partnership in Campbelltown, the capital of the under 5's in Australia, we started off with a rather strict view that we would only work with children with intellectual disability between the ages of say 5 and 10, but soon, when a mum emerged with an adolescent where demographically none was supposed to exist, or an adult with an intellectual disability, or a person with multiple disabilities, everyone invariably found common ground, and the priorities of the group widened to include these new people.  Each time this occurred, everyone would vow not to widen the charter of the group again.  But sooner or later the rule was broken and I must say I found this process useful and refreshing and healthy.

However, there is a difference here between having a policy for people with disabilities in general and this natural, incremental process of identifying common interests, strategic advantages and points of alliance.  Government, the professions and the political process would love to have a "one size fits all" ideology of disabilities.  Everything would be in the same box.  The point I am making here is that it is totally inappropriate for decisions about strategic policy alliances to be made on artificial boundaries and at central levels.

At grassroots levels, alliances with people who have disabilities of all kinds are necessary and desirable where common interests occur.  But at a removed ideological level, at a governmental level and at a bureaucratic level, is important to insist on difference, subtlety and individuality or what David Tunbrell said last year "appreciating people in their particularity, complexity and diversity".

So in Queensland we should be very grateful to the Beattie government and to the current Minister for the creation of Disability Services Queensland, it is a major achievement.  It is a new and separate agency of government representing disabilities with increased funding.  But I think we have to recognise that DSQ is not an end in itself.  It is only one step on a long and evolving journey.  The politics and alliances of 21st century disabilities policy is about, for example, DSQ in Brisbane growing smaller and smaller and evolving communities of people with disabilities, in regions and in areas of particular disabilty, growing stronger and stronger.

In the future I see 'communities' of people with disabilities becoming places where government directly invest in the life strategies of people with disabilities and I see that these life strategies will be overseen by communities, non-professional stakeholders, cooperatives and the representatives of people with disabilities. There will not be much choice about this course in my view because without taking such a strategy, we will never meet the unmet needs, governments will continue to be ineffective and parents and families will continue to live in a state of stress and crisis. So to return to my topic, we need to be creating these regional and special interest communities and organisations that are capable of representing individuals, advocating for them and are capable of managing the systems and resources that are in place to support them. Is this asking too much? Well we see, in fact, these kinds of organisations, we see these kinds of individuals and advocates are everywhere throughout the disabilities communities, butthey operate on an ad hoc basis, with inadequate resources and sometimes in competition. I am thinking of the extraordinary efforts people have to make to set up businesses, refuges, houses, community facilities to support their children or family. I am thinking of entrepreneurial leaders I have met in my short time back in Brisbane. The fact is natural leaders abound people like Julie Simpson, John Homan, Chris Allison, Julie Patterson who are just some of the people that I have met. Our job is to recognise these people and their organisations on a formal basis and to set up the expertise and resources to support them, and in supporting them and their communities, I think we will kick a great many goals.

In ten years time I hope DSQ will be one of the smallest government operations, a staff of perhaps 20, their job will be to ensure that a fair proportion of funds flows to each 'community' of people with disabilities based on the profile and population of that community. This small staff will make comparisons of outcomes and quality between different communities of people with disabilities, it will transfer knowledge and facilitate communications and create networks. However, the decisions about how to use and deploy resources will be devolved downwards to the people with disabilities and their representatives. The fact is that block funding, tied to complexity of need, can never be properly tailored in its detail by centralised bureaucracy, the small and all important decisions can only be made by truly empowered communities of people with disabilities. They can make the appropriate decisions about how to best spend that precious dollar, but not only to spend it, to invest it, leverage it, turn it into ten.  So that in my view is the new frontier: establishing these entrepreneurial, regional and special interest communities and organisations that are capable of not only administering multi-million dollar budgets but being life long, whole of life entrepreneurs and advocates for their members. This model will not only be a new and refreshing development in the area of disabilities it will be a model for the rest of the social welfare state from education to social security.