Academic journal article American Annals of the Deaf

Young Deafblind Adults in Action: Becoming Self-Determined Change Agents through Advocacy

Academic journal article American Annals of the Deaf

Young Deafblind Adults in Action: Becoming Self-Determined Change Agents through Advocacy

Article excerpt

SIX YOUNG DEAFBLIND ADULTS took a 1-week course on civic engagement and advocacy, which provided the focus for a participatory action research study with a collective case study design. They selected advocacy topics, were briefed on these policy issues, and were paired with experienced mentors for meetings with legislators in Washington, DC. Eight themes were identified from constant comparative and in vivo analysis of classroom discussion notes, interviews, and journals: (a) defining advocacy and advocate, (b) rights and equality, (c) expectations, (d) role of education in change, (e) deafblind expertise, (f) characteristics of effective change agents, (g) advocacy is teamwork, (h) future advocacy. In the classroom, the participants learned about policy issues, communication considerations, and leadership, then applied this knowledge in the legislative arena. Through the advocacy process, they learned to apply their personal strengths as advocates and experienced the importance of teamwork in advocacy.

In the present article, we share findings from a participatory action research study conducted with six young deafblind adults to learn more about how they experienced the process of becoming change agents. The context was a 1-week course on advocacy and civic engagement with a focus on policy issues affecting the lives of individuals who are deafblind. The course included mentored experiences in political advocacy. Interviews, journals, and discussion notes captured the insights of the participant co-researchers on access, equality, advocacy, deafblind expertise, and the role of education in the acquisition of skills in self-determination and advocacy

Literature Review

Wehmeyer (1998) has described two types of self-determination: personal and collective. Individuals demonstrate personal self-determination when they exercise control of their own lives. Collective self-determination occurs when a group of individuals with a shared characteristic or concern advocate for their right to determine what will happen on behalf of their group, as opposed to having others (who do not have their life experienees) make decisions that alter their lives. Exercising control over one's destiny does not exclude the need to learn skills that support self-determination. "All people have the right to such control, have the right to an education that supports their capacity to take greater control, and deserve the supports that enable them to assume greater control" (Wehmeyer, Bersani, & Gagne, 2000, p. 114). Self-advocacy, a component of self-determination, is a set of behaviors that can be applied to protect and promote the civil rights of one person or a group. Test, Fowler, Wood, Brewer, and Eddy (2005) identified four components of self-advocacy: knowledge of self, knowledge of rights, communication skills, and leadership skills. Very little is known about how individuals with disabilities assume leadership roles in self-advocacy (Caldwell, 2010).

High school students with disabilities have fewer self-determination skills than their peers without disabilities (Wolman, Campeau, DuBois, Mithaug, & Stolarski, 1994). The individualized education programs (IEPs) of secondary education students seldom include goals and objectives on self-determination or associated skills such as decision making (Martin, Marshall, & DePry, 2005). Negative teacher and parent attitudes regarding the potential impact of self-determination instruction can lead to fewer opportunities for skill development (Chambers et al., 2007). This lack of practice can put young adults at risk as they adopt postsecondary roles as college students, employees, or participants in the civic process.

Individuals who are deafblind are at risk of disengagement from community activities (Blackorby & Wagner, 1996), including civic engagement. Although the term deafblind implies a complete absence of hearing and sight, most individuals who are considered deafblind actually have some functional vision or hearing (National Consortium on Deaf-Blindness, 2009); thus, they communicate in a variety of forms (depending on their level of functional vision and hearing). …

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