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Research-to-Practice: Facilitating the Self-Determination of Youth and Young Adults With Deaf-Blindness
Those who know children and youth who are deaf-blind share the goal that they lead the highest possible quality of life. In order to meet this goal we must provide support and education that will enable each individual to develop a vision for the future, to speak for himself or herself, and to effectively communicate his or her preferences, values, and interests.
Many persons with disabilities, including children and youth who are deaf-blind, are not encouraged to dream about the future. Instead, their futures are often determined by others on the basis of what is available rather than what is needed to make their dreams a reality. Enhanced self-determination provides children and youth with the tools to dream about their futures and set goals for themselves. It also actively promotes those capacities often referred to as self-advocacy that increase the likelihood that their dreams will eventually be realized.
Currently, a project designed by the author and Ann Eggebeen at the University of Minnesota is studying the issue of self-determination in order to enhance understanding of this important issue and develop educational materials to support and promote self-determination in deaf-blind youth and young adults. The purpose of this article is not to provide answers to all the questions that individuals who are deaf-blind and those who love and support them may have about self-determination, but rather to raise the issue, provide a definition, and stimulate thought about new ways to support its development in deaf-blind children and youth.
What is Self-Determination?
Self-determination is the power to make choices that reflect personal preferences, interests, and values, the prerogative to have control over one's own life, and the freedom to develop a vision for the future and to have that vision respected by others. A sense of self-determination is necessary for the development of individual identity. It is a crucial catalyst of independence and autonomy, and a fundamental component of quality of life. Characteristics of self-determination include the following:
- An awareness of personal preferences
- The ability to set goals
- The ability to use the skills one possesses to achieve goals
- The ability to evaluate progress toward a goal and learn from experience
Being self-determined does not mean that one is completely independent or autonomous. People with high levels of self-determination recognize the importance of interdependence and know they need others in their lives.
Why is Self-Determination Important?
The levels of self-determination exercised by some children and youth who are deaf-blind are considerably below their capabilities. Upon reaching adulthood they are likely to find themselves living, working, and socializing in settings they did not choose and that do not reflect their preferences or meet their needs. Enhanced self-determination can help avoid this outcome. Specific advantages of self-determination include the following:
When children and youth come to believe that they have the ability to control their lives, they become partners with parents, teachers, and others both in the overall learning process and in exercising personal control. This increases their motivation, focus, and persistence and enhances the quality of their learning both in and outside of the classroom.
Enhanced Community Participation
When one talks with children and youth who are deaf-blind, it becomes clear that these are young people who have an intense desire to participate in and be a part of their communities. It is also obvious that many have an extreme distaste for being placed in the position of being dependent upon others. Self-determination skills directly enhance the ability of young persons to live independently within the communities of their choice, maintain valued employment, and develop circles of friendship and support. When children and youth who are deaf-blind are encouraged to take charge of their lives, they are also being encouraged to live as fully included members of society both in the present and the future.
Increased Personal Responsibility
The best way to teach children about responsibility is to present them with opportunities to make decisions and then allow them to experience the outcomes of their choices. In this manner, they learn to exercise control within the home, school, and community, taking into consideration not only themselves but also others around them.
Higher Self-Awareness and Self-Esteem
Students with disabilities, especially those who are deaf-blind, are often not given the opportunity to take risks, try new things, and experience the joys of success or the lessons of failure. Self-determination encourages individuals to discover their own capacities first-hand, to understand, adjust to, and accept the challenges created by their disability, and to build upon their unique talents and strengths.
How Can Self-Determination Be Promoted?
Promoting self-determination can be viewed as a process in which parents and professionals provide supports so that, as children develop, they have opportunities to gradually take greater control over their lives. These supports could entail a wide variety of resources based upon the age and unique needs of the child. Some examples include the following:
- Augmentative communication technology
- Mobility training
- ASL instruction for parents and family members
Most importantly, however, we need to provide children and youth who are deaf-blind with ongoing opportunities to exercise personal control so they can acquire and refine the capability to take charge of their lives. Given appropriate supports and the opportunity to gradually exercise greater control as their ability to take responsibility for their decisions increases, they will create personal visions for the future, make their own decisions, independently problem solve, and learn to advocate for themselves and others.
In summary, making it possible for children and youth who are deaf-blind to take greater control over their lives will not necessarily be an easy task. Many barriers must be overcome, including those created by the individual's limited hearing and vision and by the manner in which we currently educate persons with disabilities. Self-determination is a lifelong process to which parents and professionals, can make great contributions. By seeking new ways to support the developing self-determination of children and youth, while keeping in mind the unique skills and abilities each possesses, parents and professionals can effectively prepare young persons who are deaf-blind for their lives as adults. Supporting children and youth to build the capacities that will allow them to take greater control over their lives as they approach adulthood should be one of the foremost goals of educators and parents.
This article is a reprint from Deaf-Blind Perspectives Volume 6 Issue 2, Winter 1998-99