As we slowed down and gave ourselves time to listen, reflect and think, many of us noticed how much of our attention is directed at keeping up with the demands of a very full to-do list, and how little time we make to listen to people with different perspectives. We also noticed how our thoughts about inclusion are charged with feeling.
When we have seen the transformational change in quality of life that comes when people leave settings that treat them as one of a labeled group in need of supervision because of their deficiencies and move into lives where others respect them as citizens and offer assistance that responds competently to their direction, we feel urgency to extend this benefit and impatience or frustration at others’ unwillingness to join us in the work. When we have experienced how much people with intellectual disabilities contribute when they join project activities as equal participants, we know how much we and our communities are missing when people are excluded and want more such experiences. When we have learned through action about possibilities for positive change and practices that can support that change, we feel a personal commitment that draws us toward a new and unfinished understanding of our role as professionals.
But –though we can demonstrate the benefits of change, present good reasons and facilitate practices that guide a way forward– change is much quicker to come within the temporary container of project modules and learning activities than it is in the enduring organizations that we seek to transform or the communities and political situations we want to assist people with intellectual disabilities to engage with and influence. We have seen people, including ourselves, take new learning into organizations and watched clarity about the way toward inclusion get lost in a struggle over the potential loss of well established patterns that accommodate exclusion. It concerns us when family members and people with intellectual disabilities say “no” when invited to figure out how to take up new responsibilities for more personalized assistance and community involvement, whether this reluctance comes from satisfaction with life as it is, inability to imagine a new life story, or fear of loss, failure and rejection. It can be disorienting and infuriating to discover that people in authority have such a different understanding of what we read as revolutionary provisions in The Convention on the Rights of Persons with Disabilities that they can build new group homes to replace old institutions, or continue to deprive people of equality before the law, without a moment’s concern or thought. Deciding to learn a new way to plan with people brings us to the choice of how, if at all, we will take part in the struggle for human rights.
Creating new paths to inclusion is structurally difficult. Our current system, which makes inclusion difficult, functions as if it were consciously designed to produce exclusion. Historically, most service structures arose from a cultural sense of difference between “us” (ordinary citizens) and “them” (incapable, vulnerable, dangerous, socially burdensome). Services were organized to protect, supervise, occupy, care for or instruct people in groups constructed around deficiencies defined by professional experts.
Creating new paths to inclusion is culturally difficult. Almost everyone involved – people with intellectual disabilities, families and staff– has adapted to group based, staff controlled structures at the margins of community life. Old patterns of control and segregation hide in unexamined assumptions, many of which are very hard to talk about without defensiveness.
Creating new paths to inclusion is socially difficult. Current structures and the social world they create have the loyalty of many participants, including many people with intellectual disabilities and their families. Every structural change touches many people with different interests, each of whom can find a way to say “no” or “not until…”. Conflicting loyalties and the threat of loss or failure that significant change brings can divert efforts to act from the new. Honest differences about what is desirable and what is possible often hold things up. It can take considerable time and political skill to mobilize people for change.
Creating new paths to inclusion is generatively difficult. New paths must be created, one person at a time. This is particularly challenging if, as we should, we aim to include people who require significant accommodation and assistance because of complex physical and cognitive impairments, communication that challenges others’ capacity to understand, or difficulty regulating emotion and behavior.
Creating new paths to inclusion is personally challenging. The system that inhibits selfdirection and inclusion is not “out there”. Each of us is a functioning part of that system, though our consciousness of and comfort with our contribution to reproducing current reality varies. Changing the system means changing the internal place from which we act: noticing the patterns of thinking and feeling and action that we download mindlessly; intentionally sensing new ways to understanding our situation; listening for the new that wants to emerge and our highest possible contribution to that emergence; crystalizing a vision that guides learning how to bring the new into being by prototyping; participating in developing an ecology that supports the new.
The tools and ideas the project transmits energize us and can create clarity and commitment to personal and organizational change. The more clear the benefits that people can experience with individualized, self-directed supports for personal community participation become, the greater the tension many of us feel between the future that we are called to create and what current organizational capacities and policies make difficult. Applying the tools that animate us with the promise of change uncovers more questions and different understandings of inclusion. The fact that new paths do not open from straight line thinking makes the field more ambiguous and more filled with possibility. The change we need demands letting go of familiar ways and joining those people and families who want a new relationship with their communities to discover new paths and new forms of support.
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