Self Determination, Choice, and Disability Rights

Before a person with a disability can secure a place at a decision-making table to bring about change -- access, availability, and rights -- they need to be self determined in their own lives. Even with that they need choices from which to pick and a team helping them secure those choices. The process of becoming self determined and making choices in one own life, prepares a person with a disability contribute to decision-making in large contexts.

At the Center on Disability Studies, College of Education, University of Hawaii at Manoa, my colleagues, Eric Folk, Bob Stodden, and Sean Nagamatsu, with funding from federal and state sources, are running three projects to help individuals with disabilities achieve success in postsecondary education. A key component of their work is to expose young people to the concept of self determination and apply its principles in their own lives. They define self determination as when an individual has the awareness, skills, and power to make the right decisions for themselves and their futures. They break down self determination into four things 1) knowing what you want, 2) regulating yourself to work for it, 3) believing and knowing you will succeed, and 4) finding partners and advocating for what you want.

Folk et al. train young people in how to be more self-aware; regulate their habits, actions, and thinking, that is be in control; introduce self-efficacy, that is aim high; practice self-advocacy; set goals ("a goal is a dream WITH A PLAN you will actually do"); engage in problem solving (identify a challenge, consider ways to address it, decide which way to address it, and then take action); be decision makers (identify options, consider each based on facts, and select the best option based on your goal, life vision, and situation).

Practicing these basic skills in one's own life prepares everyone to be meaningful contributors at decision making tables where access, availability, timing, supports, funding, staffing, and other key decisions are being made about community improvements in education, jobs, health care, housing, transportation, retail sectors, physical infrastructure, justice, elections, and use of leisure time.

Rights are words on paper. The UN disability rights treaty, the Convention on the Rights of Persons with Disabilities, gives us a vibrant blueprint of what should be. But, it falls to us to bring these words to life. So many people with disabilities, especially in developing countries, in rural areas, and from disadvantaged groups, lack the opportunity to become the decision maker in their own lives, much less help shape what their communities or nations offer to be in sync with the UN treaty. We must find the ways and means to reach these people. First, we need to listen. Second, we need to help them with THEIR preferences, priorities, or goals. Third, we need to offer a process for reaching THEIR goal(s), a process that is translated into a local frame of reference. For example, we cannot demonstrate how to plan if a person or group have never heard of or done planning. Fourth, we need to explore with these people how to capture and preserve the evolution of their efforts -- dairies, story telling, records, and reports -- written and audiovisual -- that become a natural, acceptable extension of in-country traditions.

If we do all this with respect and patience, the right kind of attitudes, behaviors, and policies will blossom; communities will be more inclusive; and individuals with disabilities will help stitch the social fabric of their neighborhoods, towns, regions, nations and our collective history.

Thank you,
Common Grounder