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Whole life practice – advocacy

The Whole Life Project | The Soul of the Project | Understanding Learning Disabilities | Advocacy | Building Relationships of Trust | Tools

System advocacy, self-advocacy and awareness-raising

Recent literature on LD in adult literacy settings, including the work of LD advocacy groups, emphasizes the importance of self-advocacy skills for individual learners with LD. In her review of contemporary notions of “self-advocacy” Aspis (2002) noted that self-advocacy has come to mean:

Knowledge of moral rights; knowing who is the manager of the institution or system; having the knowledge and ability to choose what services are on offer; the ability to use the interpersonal skills which professionals use; being confident during meetings; and stating that service providers/non-disabled practitioners are equal to people with learning disabilities’ (p. 3).

As helpful as these skills are, Aspis notes that they tend to reflect the interests of service providers because they “ensure that boundaries are set that limit what people with learning disabilities can advocate for and where they can do this” (p. 4). This constrained view of self-advocacy can also contribute to the stigmatization of people with learning disabilities, by curtailing the power of self-advocates to effect systemic change, focusing instead on their need to personally adapt to existing, and often discriminatory, institutional practices. Buchanan and Walmsley (2006), argue that stigmatization is a social process that requires advocacy on a social level. This attention to the social context shaping policy and practice on learning disabilities has produced a number of promising advocacy initiatives centred on storytelling linked to action, or “critical storytelling”.

For example, Shessel and Reiff, (1999) conducted in-depth interviews with adults about the impact of learning disabilities on their lives. Many of the adults shared that along with the suffering associated with having a learning disability they felt that they had become stronger and more able to help others. The positive influences of a learning disability on these adults lives included: “helping them to become better people, allowing them to think creatively, increasing their sensitivity toward others, making them better professionals and developing in them the desire to help others” (p. 311). It is through opportunities to share their stories and experiences with the broader public, including people with learning disabilities, that these qualities and skills are leveraged to promote both self advocacy and systemic advocacy. Indeed, self and systemic advocacy and “building the spirit” may be seen as inter-connected in a “whole life” approach to learning disabilities.

Citing Seligman’s (1991) research on “learned helplessness” and “learned optimism” Shessel and Reiff conclude that when a learning disability is regarded as “personal, permanent and pervasive”, depression can result. However, Shessel and Reiff (1999) conclude that when learning disabilities are reframed as common, public issues, “learners are often able to see and explore the possibilities for growth and development” (p. 311). Not only does this positive reframing act as a protective factor to individuals with learning disabilities, it also serves to educate the broader public, and policy makers in particular, of the inequalities embedded in institutional practices and policies with respect to learning disabilities. However, as Seale (2007) and Aspis (2002) caution, these self-advocacy strategies should not be configured in the interests of service providers, policy makers, therapists and other stake-holders, to deflect attention from the need for institutional and policy reform. They note that reflecting upon, and sharing personal experiences of living with learning disabilities needs to be combined with collective action if any institutional or societal change is to result. Seale (2007) found that the creation of web-based homepages as part of a broader managed web-site was an effective self-advocacy tool for framing and sharing learning experiences, while challenging systemic inequities. Published personal writing, public speaking, letter writing, protest and mutual support are other effective tools that connect learning, self-advocacy and system advocacy.

PACFOLD (Putting a Canadian Face on Learning Disabilities), a project of the Learning Disabilities Association of Canada (2007) is another example of the use of storytelling to promote self advocacy and systemic advocacy. In the format of “day in the life” composite scenarios, PACFOLD incorporated data gathered from research on the impacts of LD on family life, social life, work, education and health from a range of studies on LD in diverse settings, to “tell the story” of LD in Canada. The outcome of the project was a set of advocacy tools, based on systematic research, which can be used to instill an understanding among public policy makers that learning disabilities are not a “school problem” but have life-wide implications which are often more pronounced in adulthood. Aside from making “personal issues public” (Mills, 1959) through story telling practices, the literature also suggests that adult literacy programs cultivate a range of supports and social networks for teachers and learners outside the classroom. In this way, self and systemic advocacy also involves removing barriers to learning and access to services through inter-agency collaboration, and “wrap around” learning supports. Thus, self-advocacy and systemic advocacy are best seen as interconnected, and part of a broader public policy context.

Resources

Calvin, J. & Duffy, K. (1994). A Community Handbook on Developing a Literacy and Disability Awareness Training Program.

http://library.nald.ca/learning/item/4969

This resource provides information and strategies for literacy educators working with people with disabilities (that include learning disabilities) to help people make their own choices and advocate for themselves. The book features strategies and guidelines for planning and facilitating workshops on disabilities for literacy educators. See the work of Mel Levine, All kinds of minds and The gift of dyslexia, for more in-depth discussion about the positive aspects of LD and how society and learning environments can be transformed to welcome “all kinds of minds”. Developed for use by Independent Living Resource Centres (ILRC) across Canada.

Lavoie, R. (1996). 
FAT City: How Difficult Can This Be?

Video 
http://www.ricklavoie.com

CBAL (Columbia Basin Alliance for Literacy) and other groups have successfully used this video (FAT is Frustration, Anxiety, Tension), to raise awareness of learning disabilities and to reduce the stigma often attached to LD. They found that use of this video was most effective when followed by a panel discussion comprised of people with learning disabilities who share their experiences with educators and other community workers. This video is available in most local libraries or order it through Rick Lavoie’s website, where you will also find other information on LD.

LD Pride Online

www.ldpride.net/

Designed for people with learning disabilities (referred to as “invisible disabilities”) to take self-assessments, learning style inventories, read about the latest research on LD and post comments and share ideas on the online bulletin board.

North Saskatchewan Independent Living Centre (1999). Change is inevitable, but growth is optional: A self-advocacy manual. 
Saskatoon: NSILC.

http://www.nald.ca/library/research/change/cover.htm

Disabilities are broadly defined. The strength of this manual is its focus on the advocacy process, collective organizing and self-advocacy, and the legal and political aspects of advocacy. Facilitation tips are included if people choose to use this in a group learning format.

References:

Aspis, S. (2002). Self-advocacy: vested interests and misunderstandings. British Journal of Learning Disabilities 30(1), 3–7.

Buchanan, I. & Walmsley, J. (2006). Self-advocacy in historical perspective. British Journal of Learning Disabilities 34(3), 133-138.

Learning Disabilities Association of Canada (LDAC). (2007). What is PACFOLD? Retrieved March 28, 2012 from: http://www.pacfold.ca/what_is/index.shtml

Mills, C.W. (1959). The Sociological imagination. New York: Oxford University Press.

Seale, J.K. (2007). Strategies for supporting the online publishing activities of adults with learning difficulties. Disability & Society 22, 173–186.

Seligman, M.E.P. (1991). Learned optimism. New York: Knopf.

Shessel, I. & Reiff H.B. (1999). Experiences of adults with learning disabilities: positive and negative impacts and outcomes. Learning Disability Quarterly 22(4), 305-316.