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Cornell University. ILR School. Employment and Disability Institute

Course 3: Self Determination

To the Self-Advocacy Association in New York State, self-determination means:

A strong voice for and by people with disabilities, promoting independence, empowerment, leading by example, communicating, networking and encouraging each other.

Throughout history, society has not favored people with disability labels. People with disabilities have been seen as incapable of making independent decisions, who must rely upon systems and structures of support in order to ensure their own survival. This misguided belief has led to a lack of value and power for people who have disability labels and to fostering and perpetuating societal acceptance of pushing people to the margins of communities. In too many cases, these systems of support have become systems of control and oppression as they maintain control over people's lives in an effort to remedy perceived problems or limitations or to help an individual become prepared, or ready, to experience community life.

In the video What is Self-Determination? (1997. Irene M. Ward & Associates), John O'Brien discusses how current service systems tend to enforce patterns that keep people who receive services experiencing the "three D's":

  • Different (not one of us);
  • Disconnected (not part of our communities or culture);
  • Dependent (kept or managed)

and the need to move toward patterns that support people toward the experiences of the "three I's":

  • Individual (like you and me);
  • Included (like you and me);
  • and Interdependent (like you and me).

Self-determination is, at its core, designed to shatter societal perceptions and acceptance of the three D's about persons with disabilities through relentless advocacy efforts that promote realization of the three I's. Self-determination is a human rights and a civil rights issue.

Self-Determination grew out of the independent living and disabilities rights movements that were begun during the 1960's when individuals began to speak out against the commonly held belief that the condition of having a disability was an illness that was treatable only through on-going interventions by experts. People with disabilities began to demand greater say in and control over the types of services and supports they received and increased access and inclusion in the community at large. In the 1980's, John O'Brien introduced five valued experiences and accomplishments as a means to explore the nature of interacting with and/or providing services and support to individuals with disabilities. The "O'Brien Principles" highlight the need to support people who have disability labels toward experiences that allow for the:

  1. sharing of and in ordinary places (go places)
  2. growing in relationships (know people, have relationships)
  3. experience of respect, for valued social roles (be someone)
  4. opportunity to make contributions (share gifts)
  5. opportunity to make choices (have choices)

System reform relies upon the design of services that are built upon the intention to support people toward the valuable outcomes of community presence, community participation, having valued social roles, recognized and appreciated individual contribution, and having real opportunities to make choices.

During the 1990's, notable proponents of self-determination such as the Robert Woods Johnson Foundation (RJWF), forged four governing principles that serve as the framework for self-advocates as they speak out across the country for the right to enjoy a life that is self-determined.

The Four Robert Wood Johnson Principles:

  • Freedom: the ability to plan a life with supports, rather than purchase a program.
  • Authority: the ability to control a certain sum of dollars to purchase supports.
  • Responsibility: accepting a role in the community through competitive employment, organizational affiliations, and general caring for others in the community and accountability for spending public dollars in life enhancing ways.
  • Support: through use of resources, arranging formal and informal supports to live within the community.