Exploring Self-Advocacy Through Digital Exchange

The use of digital technology has become more common for those with educational or financial resources; at the same time, it has tended to marginalize
communities who lack access to higher education
or disposable income. This situation is especially acute
for individuals with developmental disabilities*. In
secondary school, typically the most advanced educational level for these learners, they are sometimes excluded from interaction with emergent information and new media technologies, and as a result, their opportunities for expression have been limited. My research addresses
this profound neglect and provides pragmatic
methodologies to include “self-advocates” (a designation those with developmental disabilities prefer) as authors, video directors and educators. Without the direct input of self-advocates, their embodied experiences will suffer from misguided re-interpretation by others. Computer and information technologies have allowed millions of individuals to contribute to a collective understanding of the human condition, exhibited on websites and through digital media production. My research addresses this question: how to work with marginalized individuals to achieve agency in sharing their knowledge with a wider social network. In the Prologue to his book Collective Intelligence, Canada Research Chair and Professor at the University of Ottawa, Pierre Lévy (1997: p.xxvii)
has written: “…if we are committed to the process
of collective intelligence, we will gradually create the technologies, sign systems, forms of social organization
and regulation that enables us to think as a group,
concentrate our intellectual and spiritual forces, and
negotiate practical real-time solutions to the complex problems we must inevitably confront.”
This poster presentation maps the digital exchange that took place during the first year of This Ability Media Club, a community-based media arts program held in Burnaby, BC, east of Vancouver. Since March 2005, six to eight core participants have met weekly with two paid staff, one a documentary video-maker with experience in community arts and the other, a veteran support worker who also serves as liaison to the sponsoring agency. Both are also academic researchers associated with Canadian
universities. Initially, our goals were to form a group that met regularly and to train individuals to handle the
technical and conceptual challenges of media production, regardless of actual form. With the advice of stakeholders,
who met regularly as an Advisory Committee, a theme was developed. The emerging filmmakers were asked to create a short video work that explored the theme: “What does community or citizenship mean to you?”
Throughout 2005, six participants developed and directed a short video project or digital story. These media works
will be featured on the home page at CitizenShift, a
National Film Board of Canada (NFB) website for “free range media” in April 2006 at the url <http://citizen.nfb.ca/>. This Ability Media Club is co-sponsored by the NFB, the Burnaby Association for Community Inclusion
(BACI) and the United Way of the Lower Mainland,
in consultation with Philia – A Dialogue on Caring
Citizenship.
In the first year, the project was based on principles that Berg (2004: p.195-6) identifies with Action research:
“…participation, reflection, empowerment and
emancipation of people and groups interested in improving
their social situation or condition.” This Ability Media
Club is a video variation of Photovoice. In her
description of the role of Photovoice within Participatory
Action Research (PAR), one of the original researchers
in the field, Caroline C. Wang (1999: p.187) writes, “In line with the values that characterize PAR, photovoice integrates a citizen approach to documentary photography,
the production of knowledge, and social action. As
Sontag has noted, “Photographs furnish evidence.””
In the case of This Ability Media Club, my research
is conducted through working with the community,
engaging in an active exchange. Knowledge about digital
technology is transferred, between the researchers and the group, from old members to new ones and with
frequent visitors to the Club. Through their explorations
in documentary video and digital storytelling, self-
reflexive aspects of the lives of participants are
exposed. By creating the media content, the directors
negotiate another level of knowledge transfer through the CitizenShift website, one that is external to the group. Data is also being created, through transcripts of media
workshops where the directors interview each other
and are interviewed. These texts will be coded and
individual changes in outlook and behaviour will be mapped over time. The research will be tracking words,
phrases or images that could indicate a shift in the
participants’ relationship to media content. Do they see themselves as consumers, fans, producers or instruments of social change and does that affect content creation?
The themes that emerge will be compared to the
researcher’s ethnographic field notes and will be viewed in
the context of the media works created by the directors.
In summer 2006, the Media Club will develop a method
of leading digital storytelling workshops through
conducting informant design sessions. The storytelling
workshops will allow self-advocate artists to
engage members of the general Burnaby community in constructing short narratives that reflect their human
and social relationships. The intention of this exhibition project is to reflect not the history of one community, but rather, by virtue of the social exchanges guided by the self-advocate artists, creation of a much wider narrative of the municipality’s story. These additional short media
works will be contributed to an exhibition (50 Years of BACI) in October 2006 at Burnaby’s Shadbolt Centre
for the Arts. A storytelling workshop will be designed that utilizes the leadership qualities and creative and technical skills of self-advocates in the group, based on their abilities and capacity for understanding through narrative interaction. In this way, self-advocates will not only contribute to the social capital of a local community but also to an international dialogue based on their usage of information technology.
The practical basis of my poster presentation will be
informed by a more theoretical investigation into social
and computational theories of collective intelligence (Lévy 1997, Rodriguez 2005), social capital (Putnam 2000), community informatics (Gurstein 2000), and the involvement of artists working within disability arts and culture (Frazee 2004). My interests are in understanding
the relationship between theoretical collective
intelligence or social capital, its applications within a physical community and how the process of content creation affects participants.
Although some academics may build a social network with those most connected to them by technology and education, my work attempts to connect marginalized
communities with an overall collective and social network, characterized by inclusion and engagement. Community informatics addresses this issue through
promoting a “bottom-up” rather than a “top-down”
approach to technological use within specific communities.
This approach to technological access is based on the real needs of the community, rather than the priorities of the researcher. In the 2004 keynote address at kickstART Festival of Disability Arts and Culture, Catherine Frazee examined cultural production by artists with disabilities, highlighting their unique perspectives and gifts while carefully avoiding sentimental re-interpretations of their experiences. My poster presentation will document the
shift, if any, in individual self-reflexivity in reference
to the texts that the artists themselves have created.
Analysis of the data will determine if they have been able to enact the term “self-advocate” through their collective actions and exhibitions.
* Developmental disabilities, in this context, are
defined as an impairment of general intellectual functioning manifested before the age of 22 that may also be accompanied by physical limitations.
References
Berg, Bruce L.. (2004) Qualitative Research Methods for the Social Sciences. Boston: Pearson Education, Inc.
Frazee, Catherine. (2004) Keynote address at
Kickstart2 Festival of Disability Arts and Culture. Retrieved PDF October 4, 2005 from http://www.s4dac.org/.
Gurstein, Michael [ed]. (2000). Community informatics :
enabling communities with information and
communications technologies. Hershey, PA: Idea Group Pub..
Gurstein, Michael. (2003). Effective use: A community informatics strategy beyond the Digital Divide. first monday Vol. 8, No. 12. Retrieved October 8, 2005
at http://www.firstmonday.org/issues/issue8_12/gurstein/.
Hawkins, Jeff with Blakeslee, Sandra. (2004) On
intelligence. New York: Henry Holt and Company, LLC.
Lévy, Pierre. (1997). Collective intelligence : mankind’s emerging world in cyberspace; translated from the French by Robert Bononno. New York : Plenum Trade.
Putnam, Robert D. Putnam. (2000) Bowling Alone: The Collapse and Revival of American Community. New York: Simon & Shuster.
Rodriguez, Marko A. (2005) The Hyper-Cortex of Human Collective-Intelligence Systems. Retrieved
October 4, 2005 PDF from http://soe.ucsc.edu/~okram.
Wang, C. C. (1999) Photovoice: A Participatory
Action Research Strategy Applied to Women’s Health.
Journal of Women’s Health , 8, 2, 185-192.
Wang, C., & Redwood-Jones, Y. A. (2001). Photovoice
ethics. Health Education and Behavior 28(5),
560-572.