Roger J. Stancliffe - Choice, Preference, and Disability: Promoting Self-Determination Across the Lifespan

• Provide cutting-edge research and practice that can improve the quality of life and well-being of people with disabilities.

• Address theory and research across such areas as hope, optimism, self-determination, and character strengths.

• Examine research- and evidence-based practices to promote involvement in goal setting, problem solving, and decision making.

• Synthesize research and practice from multiple disciplines and apply strengths-based approaches to disability.

A decent society is one whose institutions do not humiliate people. A civilized society is one whose members do not humiliate one another. Avishai Margalit

And yet, there is a solitude, which each and every one of us has always carried with him more inaccessible than the ice-cold mountains, more profound than the midnight sea; the solitude of self Such is individual life. Who, I ask you, can take, dare take, on himself the rights, the duties, the responsibilities of another human soul? Elizabeth Cady Stanton

It is commonplace in this century for family members of people with complex disabilities to say that living with disability opened their minds in ways they had never anticipated. That has been my experience over the last 36 years as a parent, advocate, advocacy organization leader, government official, and now president of Inclusion International. The doorway to the deepest thinking about human rights and about all that makes us human is opened wide by the old mistakes and new problems, the persistent paradoxes and changing issues that surround us. People with disabilities themselves often lead the way. The authors whose contributions appear in this volume have thought deeply about the questions that often confound us, whether we are politicians, mothers, or disabled advocates. A central question, in my experience, is how to support the individual freedom of persons with intellectual, cognitive, or complex cognitive disabilities.

We live in times when more people with more complex disabilities can be supported longer and better in families and communities than was ever possible in the past centuries. Then, resources, tools, and even ideas were scarce. Now, we have better systems, better technologies, and better expectations. We continue to develop better ideas, often in response to cultural shifts.

Thinking about self-determination is ever more challenging as proponents of neoliberal thought attempt to extend its reach in the world. Clearly, it is worth pursuing the idea that disabled persons can be in charge of their own destiny, but the overemphasis on individual control and personal responsibility can be isolating, illogical, and damaging. The idea that the person alone is responsible for their choices and their outcomes is laughable for families who see clearly that despite abstract theoretic doctrines, the practicable options available are often severely limited by systems, cultures, communities, and policies based on long-held ideas of scarce resources and even by family circumstances. Systems can be disabling, sometimes more than impairments are disabling. Economies and cultures can destroy capabilities or provide no opportunities for exercising atypical capacities. Alas, families and loved ones sometimes can be disabling, too.