CRUcial Times Issue 25 - Editorial

Jane Sherwin

Be discontented. Be dissatisfied...be restless as the tempestuous billows on the boundless seas. Let your dissatisfaction break mountain-high against the walls of prejudice and swamp it to the very foundation.
John Hope

These words were written by John Hope in 1896, and are a sign of the timelessness of struggles against unjust social forces. The words are also timely for those who have been involved in the community living movement: the waves of discontent have prevailed and brought about many gains in the past two decades, but there is more to be done.

From the 1970s onwards, the community living movement made it clear that people with disabilities did not belong in institutions and that congregation and segregation did not meet people’s needs for a valued life. The community living movement made many inroads, influencing policy-making across the nation. Since those initial gains, however, there has been a growth in the number of places being created for people with disabilities that are other than those of their own homes in ordinary neighbourhood settings. There has been a regressive entrenchment of practices of segregation and congregation, which are beginning to dominate service models and, once again, people with disabilities are told that ‘their place’ is in a group home, a day center, or on the periphery of ordinary life.

We invite readers to step into an uncomfortable zone: stepping away from our routines to take stock of where we are, what has been accomplished, and what still needs to be done. In this edition we want to name some sources of dissatisfaction; in broad terms they are about the lack of values and vision, the chaos of service systems and the need for reform.

Questions of values and vision.

People with disabilities continue to be perceived as objects, medical mistakes, and burdens. These perceptions exist in the wider society, but more worryingly they exist within the human service system. People with disabilities are becoming equated with funding packages or with a need to fill group home vacancies, no matter where the vacancy might be in Queensland. People with disabilities are still not seen as having the potential to learn and grow or to be full members of the community. The service system continues to offer responses that result in people simply being ‘minded’ in the community. People with disabilities and families are still not seen as being trustworthy or competent enough to have a level of authority over their own lives. They are still ‘owned’ by services even though they want to be more resilient and to be able to solve their own problems.

Service system chaos.

We live in an increasingly demanding and fast-paced world. One of the ways that complex human service organisations cope with this is through a reliance on formalised and standardised processes, and where the job of a manager can be done without knowledge of the particular issues that face people with disabilities. There is pressure on community services to become more like corporations than true welfare organisations which are involved in grass-root, social justice initiatives. In human services, a corporate culture has been forced upon those who are involved in human problems, as if human services are factories
and people with disabilities are objects or units to be counted and assessed. It is clear that economic imperatives are deemed more important than human needs. The use of benchmarking, competitive tendering and efficiency dividends are clear indications that economic concerns have a higher priority than true quality indicators, which relate to a person having access to the good things in life.

The need for reform and innovation.

Great dissatisfaction has been experienced by people with disabilities and families who, when they receive funding, can only purchase more-of-the-same from a fixed menu of congregation and segregation. In contrast to this, there are some outstanding Queensland examples of services that demonstrate key features of quality. They are of a size, structure, and location that enable decisions to be made by those who have a deep knowledge of each person receiving the service. They assist people to manage their own affairs and they strengthen rather than rupture relationships between the person, their family and others in the community. In important ways they also strengthen the local community in which a person lives. They have a strong commitment to a positive values base. Each of the examples is an individual or family-governed initiative, working in grassroots ways in their local communities.

These services are highly valued and respected. People come from interstate and overseas to visit them and to learn about how they have created such high quality support, yet they are extremely vulnerable in today’s political and economic climate. There has been little growth in services of this type during the past five years, and there appears to be little hope for their development in the future.

The community living movement was clearly active against institutions. Institutions were easy to recognise because of their size, their history and the brutalities that made media headlines. Like other social movements across the world, the community living movement has slowed. Does this mean that we are on the slippery slope of a return to institutions, even if they are located in the community? Does it mean that the efforts of the past twenty years have been for nothing? Where is the groundswell of discontent?

The groundswell of discontent is in the hearts and minds of people with disabilities, their families, dissident professionals and support workers, and moral and inspirational leaders. But the dissatisfaction needs to be brought into action. We need to create the next wave of vision, and to resist the forces of re-institutionalisation. This is a time for recreating the vision, and for reclaiming the agenda for change.