Results of project
Reporting upon and measuring change throughout a two-year research process is challenging as many changes are subtle, not always visible and usually incremental (Guijt 2008). Change is not always evident in short-term work, and Guijt (2008: 12) reports that "focusing entirely on a tangible change as evidence of impact ignores what is often slow shifts in norms, institutions, [and] political reform over the longer term'. Furthermore, any such change is hard to attribute solely to a single cause as there are always a range of forces at play.
However, given we had an explicit change strategy, we attempted to note change and collect 'evidence' through a variety of mechanisms. Child participants and their families shared their reflections of the research process at the end of each data collection period. Co-researchers were also encouraged to journal their own reflections and sometimes shared thoughts and feelings with us, and at the end of the research, the primary author met with co-researchers over several sessions to discuss observed changes, no matter how small. Changes observed or that were reported to the research team, for example, by the co-researchers, partner organisations, government representatives, and other organisations, were documented throughout the project and for three years after its end. The changes captured are likely to reflect individual events/outcomes, and there is no way of knowing if these are representative of the experience of the cohorts or within a domain more broadly. A summary of embedded changes is reported as follows.
Changes as a result of the research process: change for children and families
Children generally provided very positive evaluations of their involvement in the research. For many, it was reported as a unique and empowering experience, as explained by this child participant in the project,
I am so happy to be part of this big research project because there's never been a group of people coming around and talking to me and asking me about my problems. I really liked that you wanted to hear straight from me.
Families' attitudes about the level to which their children could contribute to the research process were reported as challenged during the data collection period. They were often surprised by the level and depth at which their children could participate in the research. Change was recorded in detail from one family. The family had lost trust in ‘others’ (disability service providers) who kept telling them what to do and had never listened to what they had to say. By contrast, the inclusive process used in this project (across four visits) emphasised building trust over time and the value of listening and respecting the expertise of the child and family. As captured by co-researchers:
Timu (Agnes's father) is so pleased we included Agnes in the research because no-one has ever asked her what she thinks or what she needs or what might help her improve her hfe. He is very committed to improving Agnes's lifestyle and providing what she needs. He tells us that it is important to him that we listened to him tell the story of his family, their struggles—the heartbreak of losing their son (who died of what appears to be the same condition that Agnes is experiencing), and their achievements. He is so proud of Agnes but he worries about her future.
Some parents who participated in the research appeared to take up new or increased roles in advocacy and public speaking, either through films, presentations at film screenings, or via the development of a family advocacy group that was established in PNG with the assistance of PNG ADP. As was noted by co-researchers:
Timu has become an important advocate for children with disabilities in his community. He said that being involved in the research gave him more confidence to understand that all children deserve to be heard and he was encouraging all the families with children with disabilities in his community to either send their children to school or teach them at home. He acted as messenger to all parents and children who do not have phone contact. His support to the research and to the co-researchers in this role was invaluable.
Attitude change through the films
The films appear to have had a significant emotional impact on viewers fostering an awareness of children with disabilities—that they exist, they can speak for themselves, they have desires and dreams, and just like other children, they ought to be able to realise them. The gentle respect of the co-researchers and their willingness to listen to and learn from children with disabilities is powerfully presented, along with the parents who speak of their children, their acceptance of disability, and their love for their children. The films appeared to have both local and global resonance. Locally, all child participants and their families were invited to film screenings that were organised by partner organisations and held in urban and remote locations. Transport assistance and meals made these events accessible. These events were reported to be valued by the children, families, and village chiefs. In addition, each child participant and their family were provided with a DVD of the films.
The accessibility features of the films were a new concept in both Vanuatu and PNG, and this aspect brought about awareness amongst viewers. Viewers with vision impairments in PNG enjoyed hearing the audio description that, for many of them, was a first-time experience. It has been reported to us that films have been drawn on for disability awareness in multiple countries, particularly Vanuatu, PNG, and Timor-Leste. It is hard to quantify this as, due to poor internet connections, DPOs in Pacific Island countries utilised both internet versions as well as DVD copies of films that were shared with DPOs.
The films have had significant global reach. Between 5 June 2017 and 9 March 2019, there have been 4,951 views combined of the films on YouTube and Tedx platforms, and they have been shared via social media by various organisations such as Enabling Education Network (EENET). The films have been shortlisted and screened by the United Nations in New York as part of their Enable film competition by DFAT during the International Day of People with Disabilities in 2015 and at TEDx Sydney in 2015. The PNG film was selected as the opening film in 2015 for the sixth PNG Human Rights Film Festival, which toured regionally. The festival director Alithia Barampataz explained in a radio interview that the films shown have a valuable role in supporting social change and will ‘preserve a moment in time that can really tell its story for years and generations to come’ (Walsh 2015). Alithia described that there are entire districts in PNG of people who are unable to pass a high school certificate, yet films in their language are accessible. She explained that everyone can understand them, and it promotes talking points in viewers' conversations with others for years (Walsh 2015).
