1.5: Different Patterns of Thinking

The era of deinstitutionalization shifted large numbers of people with developmental disabilities into a growing inventory of local services. Most of this growth transferred dominant patterns of thinking and established forms of power along with the people. True to the facts and their professional perspective, expert voices convinced judges and legislators that institutional deficiencies resulted from failure to implement known good practice. They diagnosed the cause as woefully insufficient public investment resulting in overcrowding, substandard professional and care staff ratios, and impoverished physical environments. They persuasively recommended substantial staff increases, new buildings, rapid increase in the number of service providers, and higher standards of care.

Our network developed a different, more disruptive perspective. As we learned to listen better to people with developmental disabilities and their families and observed our own practice more critically it became clear that the services we operated were not organized to support desired futures in community life outside service settings. As trust grew, more of the people we served voiced desires for a job, a home where they were not one of a client group, intimate relationships, and opportunities to pursue personal interests. These ordinary desires far too often ran aground on the structures of our group based, professionally controlled services, especially when people required more than a little assistance. Other people with developmental disabilities communicated inadequacies in the support we provided by harming themselves or others, actions that pushed us into increasingly restrictive practices including retreat to institutionalization. We realized that these were not just problems with implementing known, technical solutions. Along with the people we served, we were trapped in an insufficient pattern of thinking.

Many of our organizations could be said to take for granted a professionally distanced view of people as isolated, embodied deficiencies to be objectively classified and systematically managed. This perspective cast people with developmental disabilities in passive roles as objects of professional assessment, surveillance, and prescribed intervention. Assessment sorted people into group program models for treatment and supervision. Services were delivered in environments designed to facilitate staff surveillance and implementation of prescribed routines. When compliance with treatment regimens mitigated deficiencies, and a person better matched a professional template of normalcy, that person earned a greater measure of supervised independence. Failure to progress consigned a person to a lifetime of social exclusion in a group of people with similar status, and very few made enough progress to achieve discharge from supervision. This distanced way of knowing and resulting structures of exclusion and control too often persisted as people with different qualifications and titles moved to the head of the individual service planning table and the executive offices of organizations.

We wanted a richer pattern of thought, one that took direction and inspiration from the voices of people with developmental disabilities, their families, and their allies among service staff. Wolfensberger was an important source of vocabulary and critical practices that opened up better ways of thinking. In the late 1960s he turned from the form of clinical psychology that focused on testing and treating individual deficiencies and adopted a social psychological and sociological perspective. This turn informed his work as one of the leaders in the creation of a comprehensive system of services in

Eastern Nebraska that became an international model of a local service system that was sufficient to make institutions unnecessary (Casey, 1985). He focused on discovering practical means to create systems of services that would, over generations, shift the social status of people with developmental disabilities by promoting social integration. In Wolfensberger’s vision of a desirable long term future, differences would remain, assistance in various forms would remain, but social devaluation of those differences would diminish significantly and reduce the risk of social exclusion. This vision stretched our network’s horizons and motivated us to work for changes in people’s community roles and relationships far beyond those measured by an increase in positive checks on a skill inventory.

We were inspired and informed by other creative resisters to the dominant pattern of thinking. Early in the 1970s physically disabled activists labeled the medical model of disability; theorized a replacement social model that names discriminatory practices, enforced inequality, and inaccessible environments as primary causes of disability; or-ganized politically to demand physical and social accessibility; and offered one another practical assistance and advice to control their own services (Heumann, 2020).

Burton Blatt and Seymour Sarason engaged the emerging field of Community Psychol-ogy to shift the focus of inquiry from treating individual pathology in service settings to creating social settings that enable flourishing lives in diverse communities (Sarason, 1972). Their work reinforced the application of aesthetics, story, and politics in our efforts to think better about our work. Their colleagues at Syracuse University’s Center on Human Policy introduced us to qualitative research methodologies and a perspective on disability as a social construction and the development of a sociology of acceptance grounded in their careful listening to people with disabilities and close observation of service and community settings (Bogdan & Taylor, 1975).

Network members reached outside human service fields for ideas and planning practices. Connections between the Canadian National Institute on Mental Retardation and the Environmental Studies Program at nearby York University linked us to Eric Trist and his colleague David Morley We explored the search process, a participatory planning method that supports diverse voices to develop images of a desirable future strong enough to guide sustained efforts to learn new ways in a complex, changing, and unpredictable environments (Emery and Emery, 1976). In the search process, an image of a desirable future is not a fixed goal to be analyzed into targets to hit. It is a tentative, narrative synthesis of differing expressions of human purposes that correlates action in a common direction of travel. The shared image is reshaped and renewed to adapt action to rapid and unpredictable environmental changes.

Learning the socio-ecological systems theory behind the search conference clarified an-other pattern of thinking that limited our work (Ackoff, 1974). Individual planning in social care was commonly built on mechanistic assumptions. Based on their diagnoses, professionals predicted attainable goals for an individual, set objectives, and prescribed procedures. We came to see that this (attempt to) predict and control approach had four defects. First, the assumption of predictability was false to our experience: unpredicted skills and interests showed up in unexpected ways as people had access to new opportunities, and so did unexpected problems. Underestimation of a person’s capacities was far and away our most common error. Second, it reinforced institutional power relationships by setting the professional voice above others and subordinating the person to staff assigned to implement the plan. A person’s access to desirable experiences, like a visit with family, might be made contingent on compliance with staff orders.

Third, it closed off discovery of new possibilities. It confined attention to the person in service settings when attention to the person in community settings produced better questions and liberated new ways of knowing and acting. Fourth, it divorced the work from a principle source of meaning: learning to move, however haltingly, toward the ideal of a more just and inclusive community. Experience showed that goal setting by people with developmental disabilities themselves and family members could also be entangled by these limitations.

Approaches to person-centered planning took shape as our network gained experience of social innovation and developed new ways of thinking. Methods grew through adap-tation of procedures developed while teaching and applying Wolfensberger’s thinking and applying the qualitative methods in use at The Center on Human Policy. Windows into people’s current and desired lives opened as oriented ourselves to supporting valued human experiences: being respected, belonging, choosing, contributing, participat-ing. An empathic reconstruction of personal history could highlight both the burdens imposed by social exclusion and restricted freedom and the forms of resilience the person employed. The concept of Model Coherency – aiming to harmonize an account of the most important human needs of people an organization served with the way ser-vices are conceived, organized, and delivered– formed the core of thinking about how to support movement toward a person’s desirable future. The idea of modeling methods on those valued outside the human service world took us to adapt techniques sources like Richard Bolles’ What color is your parachute? (Bolles, 1970), an approach initially designed to reveal hidden interests and capacities of engineers changing jobs.

Methods took shape as we folded in practices from other fields. The search process framed collaborative effort to visualize a desirable future. Group Graphics (Sibbet, 1977) introduced visual methods to energize the dance between imagination and action by setting forth graphic templates to guide thinking and capture emerging ideas and images. Interactive planning (Ackoff, 1974) specified methods for generating idealized designs that surfaced and challenged limiting assumptions. Organizational develop-ment provided new maps of change (Weick, 1979). New approaches to community development (Kretzmann and McKnight, 1993) expanded our tactics for discovering community opportunities and strengthened our focus on planning as an active process of revealing people’s gifts and potential opportunities through community exploration.