CRUcial Times Issue 26 - Editorial

Jane Sherwin

Across time and across issues, dissatisfaction about the way things are has led people to imagine better things, to find like-minded others, and to find alternative ways of doing things. In the lives of people with disabilities and families, there is increasing dissatisfaction with progress in terms of people achieving ordinary lives, in homes of their choosing, in customary lifestyles, regular education, employment and recreation.

The community living movement has fought against notions of the non-humanness and the other-ness of people with disabilities. We have fought hard against beliefs that people with disabilities are sick, and that they need to be fixed. There has been a long struggle against the entrenched belief that professionals always know the answers, that people with disabilities need to be with ‘their own kind’ and cannot have lives like other people in the general community.

Did the community living movement miss the mark? Were we fighting so hard for the closure of institutions that we failed to see that a dominance by services in people’s lives would not be as enabling as we had hoped? Were we sleeping while market and business paradigms overtook the government and community sectors? Did we stand by while our government and service system began an enduring love affair with the idea that people with disabilities and families are mere commodities? Where was our astonishment as they became wedded to content-free management, to assessments, models, regulations, and to a set menu of service types?

Did we fail to see that what was actually happening was a situation where communities, and the individuals in them, were becoming managed? Consultations and opportunities for influencing the course of the future have become forums for sanctioning those things that have already been decided by those with the power. Mechanisms that could be expected to allow greater levels of authority by individuals in their own lives, such as individualised funding and individual planning processes, have instead become the tools of standardisation. The impact of all this on individuals and families is that there is an increasing sense of powerlessness, and a sense of frustration that the future holds more of the same. The service system grinds ever onwards, growing at a rapid rate, becoming increasingly more complex, and more powerful than the ordinary citizens who just want a decent life, and help to get it. The service system works in ways that have become an exercise of power and control in the name of supporting people to live in the community.

Communities cannot thrive under mechanisms that impose restrictions and limited ideas. ‘Managing community’ could be contrasted with policies and strategies that encourage ideas, nurture individuals, families and collectives to have high levels of control over their own lives, and allow supports and services to be truly helpful.

A movement for change, such as the community living movement, consists of a network of relationships, ideas about what is important, and sets of actions. These actions do not need to be in the realm of public rallies, although they could be, but they also include actions which lead to enduring and positive change.

We need consciousness-raising of the kind we have seen in the peace movement, the women’s movement, and the environment and indigenous movements. While many people in the disability sector have been engaged in working towards ‘good lives’ and good ways of supporting people, their ideas and language have been co-opted by government and the service system and used in ways that show low levels of consciousness about what is really needed to support people well.

The community living movement needs investment in ethical leadership, and stronger network relationships. We need to create opportunities for fostering different ways of doing things. We need energy, sophistication, social unrest, and political determination. It may be that what we are now pursuing has moved beyond the ideas underpinning ‘the community living movement’. It may be that the movement is still evolving, and that we are yet to name what is now being pursued.

This edition of CRUcial Times brings into sharper consciousness the critical importance of true community living, and the importance of being engaged in a broad, social movement to make this possible for all people with disabilities. The CRU Conference, ‘Gathering the Wisdom’ will be an opportunity to hear others illuminate these important matters of our time, and of the future. We look forward to your company.