Bridging the Local–Universal Divide of Human Rights Research: Voices of Children with Disability in Developing Countries

Promoting Social Inclusion

ISBN: 978-1-78769-524-5, eISBN: 978-1-78769-523-8

ISSN: 1479-3636

Publication date: 4 June 2019

Abstract

This chapter presents a research method for operationalizing a human rights approach with children with disability in developing countries that confronts the tension between a universal human rights discourse and local knowledge and customs. This research was undertaken in Papua New Guinea and Vanuatu. Through methods of data collection, analysis of data and the dissemination of findings, the focus was on utilizing human rights concepts and ideas in a way that enabled the local meanings and experiences of children to be re-interpreted against the Articles of the Convention on the Rights of Persons with Disabilities (CRPD). Findings could then be presented in a manner that communicated effectively with governments and local and global organizations, while also honouring the particular experiences of children with disability. Such an approach is, of course, subject to critique and ongoing adaptation.

Keywords

Citation

Jenkin, E., Wilson, E., Clarke, M. and Campain, R. (2019), "Bridging the Local–Universal Divide of Human Rights Research: Voices of Children with Disability in Developing Countries", Promoting Social Inclusion (International Perspectives on Inclusive Education, Vol. 13), Emerald Publishing Limited, Bingley, pp. 121-137. https://doi.org/10.1108/S1479-363620190000013010

Publisher

:

Emerald Publishing Limited

Copyright © 2019 Emerald Publishing Limited


Introduction: The Global Challenges to Human Rights Enacment for Children with Disabilities

Across the globe, children and adults with disability form the largest minority group (Meekosha & Soldatic, 2011), most of whom live in developing countries (Grech, 2012). The Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2006) was written in recognition of the additional protection people with disabilities require to realize their ordinary rights (McCallum & Martin, 2013). Human rights conventions have been catalysts for garnering State commitment, improved policies and a better environment, by dismantling barriers and providing opportunities that are more conducive to the attainment and protection of human rights. However, there remains a significant difference between children with disabilities’ official human rights entitlements and human rights realities (Grech, 2016; Meekosha & Soldatic, 2011).

Tobin (2011) asserts that human rights are ‘anything but stable’ (p. 66); this is particularly true for children with disability in many countries who are far from realizing or enjoying their human rights, leaving their place in society a precarious one. The challenges of and to human rights are many. Rioux, Pinto, Viera, and Keravica (2016) describe the CRPD principles as ‘an illusion more than a concrete reality for most people with disabilities throughout the world’ (pp. 533–534), as outlined in CRPD shadow reports. Addressing the divide between human rights conventions, such as the CRPD, and the experience of human rights on the ground (Grech, 2016; Rioux et al., 2016) requires both legal reform and an adequate understanding of children with disabilities’ lived experiences in order to enact, protect and monitor human rights (Landman in Olshanska, van Doorn, & van Veen, 2016). Despite this much-needed focus, the human rights model of disability still remains rhetorical as an operational model and it competes against the dominant medical and charity models of disability (Rioux et al., 2016).

Critiquing and Reconceptualizing Human Rights

Despite broad support for human rights as an important framework for change, human rights as a construct has been critiqued for being a universal answer to overcoming injustice. Just as notions of childhood (Liebel & Budde, 2017) and disability have been criticized as being too narrow, Western derived and ‘othered’, functioning to justify colonialism (Grech, 2012), so too have human rights and the concept of rights been criticized for being a nominally Western and individualized model that is transposed onto states and cultures even where these are collective in nature. Thus, this transposition can be viewed as an extension of colonialist practice (Meekosha & Soldatic, 2011) which has denied a range of contextual interpretations, indigenous knowledges, values and law (Budde, Invernizzi, Liebel, & Milne, 2017; Meekosha & Soldatic, 2011), with a favouring of human rights for some, but not others (Pisani, Grech, & Mostafa, 2016).

Critics argue that human rights cannot be universal but are experienced differently amongst the heterogeneity of contexts including disability (Grech, 2016; Meekosha & Soldatic, 2011). Other criticisms include the use of human rights concerns as an excuse for achieving ‘economic and geopolitical interests of hegemonic capitalist states’ (Meekosha & Soldatic, 2011, p. 1388). So, too, can the concept of human rights be used to justify ‘helping’ and educating the ‘underdeveloped’ (Liebel, 2012b) through practices that are not rights based and have the potential to undermine the agency and dignity of children enshrined in the Convention on the Rights of the Child (CRC) (United Nations, 1989) and the CRPD. Grech (2016) observes that rights work (often in the form of ‘development’ work) is in itself colonizing as experts from Western countries, and even elite leaders within developing countries, continue to dominate the disability rights agenda and speak on behalf of people (including children) with disability, particularly those experiencing poverty. Whilst respect for cultural traditions is outlined in the CRC preamble (United Nations, 1989), aiming to encompass principles across all cultures and beliefs, Tobin (2011) and Liebel (2012b) note that human rights for children raise political, theoretical and cultural tensions nonetheless. Liebel (2012b) reports that:

the CRC leaves little space to imagine other childhoods, that do not conform to the structural pattern of ‘modern’ childhood, and that indeed are practiced in some cultures or do transcend the societies and cultures we usually have in mind and which children possibly create themselves. (p. 23)

Attention to the human rights of children has traditionally been a top-down exercise, with states ratifying universal rights and then implementing rights accordingly (Morrow & Pells, 2012; Vandenhole, 2012). The overly legalistic focus has left little room to understand the everyday human rights experiences of children, including those who have a diverse range of impairments and experiences and reside in different contexts across the globe. Whilst the top-down focus of children’s rights is helpful in legitimizing and potentially systematizing rights (to ideally align policy and practice), it obstructs a sufficient ‘re-conceptualization of children’s rights, since little attention is given to their broader meaning and implications, the social and political contexts […] and their significance for children and their relationship with right-bearing adults’ (Liebel, 2012a, p. 7).

As a response to the critique of a top-down, legalistic and colonizing human rights focus, there has been a range of suggestions for understanding the everyday rights in context, or from the bottom up (Alderson & Morrow, 2011; Ife, 2010; Liebel, 2012b). Alderson and Morrow (2011) maintain that ‘rights must gain relevance and legitimacy at the local level as the basis for achieving acceptance’ (p. 907). This local understanding will have contextual and cultural relevance and hold meaning, creating space for ‘a response to culturally or otherwise specific challenges and local issues’ (Vandenhole, 2012, p. 80). In relation to exploring the human rights of children with disability, the primary concern is an effort to understand the rich diversity of everyday experiences that children report, within a human rights framework, in order to better inform change, from the ground up, to work towards enabling equal human rights coverage to children with disability as stated in the CRPD. For human rights to become meaningful, available and protected at the local level, opportunities need to be explicitly provided to children with disabilities to share their unique experiences, priorities and concerns. Children with disability’s human rights priorities can then be acted upon in a more methodical way to ensure that changes can be made locally, influencing upwards. Clearly understanding children with disability’s issues can enable an improved integration into both policy and practice (Carpenter & McConkey, 2012) and ‘contribute to a better life for children in different parts of the world’ (Kjørholt, 2017, pp. 167–168). Budde et al. (2017) suggest that:

there is a way forward to implement the human rights of children in a culturally, politically, economically and socially sensitive way which starts with the principle of due deference (i.e. see Tobin, 2011) to the communities in general, but particularly towards children themselves. (p. 239)

This approach will ensure that reform occurs according to children’s priorities and in ways and means that work within contexts, relationships and with respect for the multidimensional forms and experiences of disability (Morrow & Pells, 2012).

Lack of Consultation with Children with DISABILITY

Critical to any locally relevant approach to human rights for children with disability is the privileging of the experiences and views of children themselves. Resonant with this focus, the CRPD committee asks that children with disability be consulted so that they can make decisions and contribute to ‘the development and implementation of legislation and policies to implement the present Convention’ (United Nations in McCallum & Martin, 2013, p. 24). This is needed as their experiences of disability and barriers to inclusion cannot be identified without their input. As Huus, Granlund, Bornman, and Lygnegård (2015) report, particularly of children with disability living in poverty, ‘their own voices should be heard – otherwise, our understanding of aspects that directly affect children (e.g. health, welfare, rights) will be incomplete’ (p. 1010). This is confirmed by Sabatello (2013) who recommends that:

additional studies of the perspectives of children with disabilities about their rights, how they want them to be implemented, and what are the barriers they experience are crucial to develop a child-centered approach to the implementation of the CRPD. (p. 484)

Article 4.3 of the CRPD outlines that ‘States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations’ (United Nations, 2006). Though how children with disability are able to express their human rights experiences through this approach remains unclear. Despite recommendations addressing barriers to rights attainment, little evidence of obtaining data directly from children with disability in relation to their human rights, by organizations, states or the CRPD committee, can be found in the literature. 1 This seems to imply that children with disability remain as objects, rather than subjects in matters that affect them.

It is in this context that Grech (2016) questions whether disability rights will make any difference to people (including children) with disability, particularly in poor or rural areas where their voices have remained unheard. Lang, Kett, Groce, and Trani (2011), Grech (2016) and Pisani et al. (2016) all suggest that people with disability (including children) have limited access and resources to politicize their denial of human rights and to act as champions for change. Grugel and Piper (2009) suggest that there are ‘considerable practical difficulties in the way of vulnerable people claiming rights, especially when they experience multiple deprivations’ (pp. 84–85). One has to question, then, how feasible it is for children with disability to seek action on their human rights when they may not have the skills, resources, information or access to education and literacy to advocate on their own behalf and hold their state to account (Katsui, Lehtomaki, Malle, & Chalklen, 2016; Pisani et al., 2016).

Despite multiple recommendations from the CRPD committee, as well as from researchers, that children with disability are provided with an avenue to share their experiences in order to inform policy, there is little evidence of this occurring in any systematic way. Carpenter and McConkey (2012) conclude that, to date, children with disability’s ‘influence has been negligible on policies and service practices that directly affect their lives’ (p. 251). Relying on parents to speak for them, or ‘experts’ to write policies on their behalf, is not only inaccurate (particularly in contexts of poverty) (Huus et al., 2015), it is paternalistic and related to models of childhood and disability that emphasize incompetence, protectionism and special needs (Hanson, 2012; Jenkin et al., 2018). This accentuates the need for a systematic, contextual and inclusive method whereby children with disability can be supported to report upon their human rights experiences, priorities and concerns to ultimately affect change.

Operationalizing Human Rights Research with Children with disability

Whilst rights-based approaches are emerging in child research (Bessell, Beazley, & Waterson, 2017; Invernizzi & Williams, 2011; Invernizzi, Liebel, Milne, & Budde, 2016) and adult disability research (Fisher, Shang, & Xie, 2016; Olshanska et al., 2016; Rioux et al., 2016), rights-based research with children with disability is limited to a handful of studies, particularly in developing countries (e.g. Huus et al., 2015; Nguyen, Mitchell, de Lange, & Fritsch, 2015). Wickenden and Elphick (2016) confirm that the ‘changing perceptions and expectations about children’s agency have generally not been extended to disabled children […] who remain largely excluded from participatory research and consultation’ (p. 169). Even with research focused on adults with disability, Rioux et al. (2016) emphasize that the use of the human rights approach in research with people with disability remains, for many, an ‘abstract framework, empty of any practical impact that improves their lives’ (p. 534). The lack of a rights-based approach in research is perpetuated by a continued dominating colonialist approach to research by Western researchers, imposing pre-determined research agendas and methods onto people with disability in developing nations (Fisher et al., 2016; Grech, 2012; Rioux et al., 2016).

The ‘Voices of Pacific children with disability’ research project, undertaken between 2013 and 2015, sought to address this complex set of issues. Funded to investigate the human rights priorities of children with disability in Vanuatu and Papua New Guinea (PNG), the project collected data from 89 children (aged 5–18 years) and used these data to inform a range of change actions locally and more broadly. A core goal of this research was to develop a set of tools that allowed children with disability to share their experiences and priorities, which were then analysed through a human rights framework (CRPD). The data collected from these children in both countries demonstrated that attainment of human rights for this cohort was limited, but there was a clear determination of these children to fully participate in their communities and, in particular, to positively and actively contribute to their families and communities’ betterment (see Jenkin et al., 2017a for information about results).

The project utilized a partnership approach involving two Disabled People’s Organizations (DPOs), a child international development agency in both countries and an Australian university. Together they provided a mechanism to share and critique knowledge about human rights, disability and local contexts, towards the development of a research method that would be locally relevant but also speak to broader human rights change mechanisms. Three strategies were critical to this. First, the involvement of local DPO members in many aspects of the project provided an important lens through which to understand both the meaning of disability and human rights and the local experience of them. DPO members were heavily involved in multi-day training workshops for project researchers (both local and Australian), where conceptualizations of, and terminology related to disability were discussed, challenging some of the views of project members without disability. These workshops also forecast the contexts and experiences of children with disability in each country, highlighting local attitudes towards children with disability and common barriers to inclusion. Further, DPO members connected researchers to local communities, explaining the research project to local families and village heads. In addition, DPO leaders played key roles in utilizing the findings of the project in advocacy to government and donors. Second, the project team employed indigenous adults with disability in both countries as local researchers (for more on this strategy, see Jenkin, Wilson, Clarke, Murfitt, & Campain, 2017[b]). This strategy aimed to capitalize on the expertise generated from lived experience of disability, local cultural knowledge and networks as well as offer identifiable role models to children with disability with whom the researchers would work. Third, the project team developed an accessible and inclusive participatory method of engaging with children and supporting them to express their views. The method, described in detail elsewhere (Jenkin et al., 2017a; 2017b Jenkin et al., 2017), included a suite or mosaic (Clark & Moss, 2011; Save the Children, 2008) of oral, aural, visual and tactile ‘tools’ to support children with diverse disabilities to communicate their experiences and perspectives, as well as allocating substantial time for researchers to build relationships with children and families through multiple visits and shared play.

This chapter will explore three further specific methods used to adopt a rights-based approach to research within this project that attempted to engage the power of both local and universal conceptualizations of human rights towards positive change for children with disability in PNG and Vanuatu. This includes the approach used to localize human rights concepts and ideas, analyse data and use the findings for change at a variety of levels.

Localizing Human Rights Concepts and Ideas

The reality that rights as a concept means nothing to children with disability who are experiencing poverty and have never accessed education (Grech, 2016) must be acknowledged and was a fundamental issue for this project. Despite DPOs in each country providing training and information sessions regarding the CRPD in their constituent communities, discussions with DPO members and local researchers with disability confirmed that the language and concept of rights were still unfamiliar to the general population and children in particular. Therefore, despite the project focus being on establishing the human rights priorities of children with disability, a decision was made not to use language related to rights with children in the process of collecting data. This reflected the critique that using unknown and abstract terminology carried a risk of further oppressing, intimidating and excluding children with disability and their families. Instead, it was decided to ask children about their lives, their priorities, concerns and future aspirations through three questions:

  • (1)

    What is important to you in your life?

  • (2)

    What are your hopes and dreams?

  • (3)

    What would make your life better or happier?

The questions were translated by the local researchers into Bislama, Tok Pisin, sign language or the local language, with the conversation with children conducted in the language of choice or via other modes (family signs, gesture, body language etc.). Children were asked to tell their story, with the aid of open-ended prompts and tools (see Jenkin et al., 2017b). Feedback from researchers and participants affirmed that overall children found this to be enjoyable and accessible.

While the questions were open-ended, allowing children to speak about any aspect of life important to them, the tools developed to support this conversation were linked to the CRPD. Among the tools developed were some which provided specific aural, visual or tactile topic prompts for children to select from. These tools included the following: a photo library, from which children could select photos of relevance to their views; a sound library, with a series of sounds reflecting different topics; and ‘story in a bag’ – a collection of ‘everyday’ objects suggestive of different topics and interests. Each mode was designed to overcome barriers to participation related to specific impairments such as hearing, visual and cognitive impairment though, in practice, tools were offered to all children who chose their preferred means of engagement (with or without using these tools) and their choice was not always as anticipated in relation to their impairment. Rather than being randomly collected, specific photos, sounds and objects within each tool were selected (and created) with the explicit aim of attempting to represent the human rights areas within the CRPD synonymous with a wide range of life areas. In practice, this required the development of country- or context-specific tools, such as a photo and sound library in both Vanuatu and PNG. 2 Local researchers were trained in the Articles of the CRPD, then charged with the task of taking photographs, recording sounds or collecting objects that were locally relevant to children but which could also reflect diverse perspectives, 3 and which reflected the breadth of life areas (or rights) within the CRPD. The photos/sounds/objects (i.e. topic prompts) to be included within these tools were then numbered (to assist with data collection) and organized for presentation. 4

In this way, the method used to support children’s discussion was one that localized meanings via both open-ended questions (not using rights language) and the use of localized imagery to evoke a wide range of life areas. However, this design was fundamentally connected to human rights universal concepts via the underpinning framework of the CRPD which informed the intent as well as the selection of prompts.

Analysing within a Human Rights Frame

Despite the use of local language and everyday concepts in the collection of data, analysis of this data was undertaken using the CRPD as an analytical framework. The intention at this stage was to both maintain local meanings (through an inductive method) and connect these to an established human rights instrument (through a deductive method), which could potentially be utilized to progress change actions. Importantly, this local/universal approach evidences that the use of the actual language of rights during data collection is not necessary to elicit meaningful data about human rights.

Data from the project were comprised of written notes of each field visit and interaction with the child documented on Child Profile forms. These included a short life history of the child as provided by family members; children’s responses to each discussion question; copies of any art work, audio recordings, objects or photos produced or selected by children when using the tools; and reflective comments of parents, child and researchers about the tools used and the process. Child participatory research literature discusses the complexities of interpreting the meaning of data generated through such a range of creative methods. For example, Spyrou (2011) identifies tensions between children’s intended meanings and researcher interpretations of these and calls on researchers to ‘de-reify particular interpretations which are often taken for granted when examining children’s lives’ (p. 161) and account for the ‘complexity behind children’s voices by exploring their messy, multi-layered character’ (p. 151). Some authors advocate the importance of children interpreting and explaining their own data (Einarsdóttir, 2007; Freeman & Mathison, 2009; Save the Children, 2001) and/or researchers further validating interpretation through additional methods (Lewis & Porter, 2004). This can be more complex when collecting data with children with disability where age-related development and communication impairments may make analysis and validation challenging. For this research, meaning-making between local researchers, children and their families occurred over many visits and data collection moments, with local researchers exploring and checking meaning on each occasion. This involved confirming previous understandings and checking again that this is what was actually meant. Local researchers then played a large role in transcribing all data from the child’s first language into English, reviewing translations and transcriptions and collaboratively agreeing that these reflected the child’s views. These data were then sent to university-based researchers for analysis, with local researchers later participating in a data analysis workshop to validate the inductively derived categories and the deductive matching of data to CRPD areas. While this process does not constitute child participatory analysis, it did seek to validate children’s meanings through processes of constant checking at a variety of levels.

The CRPD was selected as the framework for deductive data analysis given it was also embedded into data collection, as described above. Overall, choosing the CRPD over the CRC as the analysis framework related to the critique of the welfare notions associated with children with disability in the CRC (Sabatello, 2013), the CRPD’s encapsulation of a human rights understanding of disability and its stronger emphasis on agency. Articles 3–30 of the CRPD were drawn upon as the coding frame as these relate to a broad range of life areas including family, education, cultural and political life.

Children’s data were separately analysed in relation to each of the three questions to which they responded. Their responses were coded against relevant Articles, with responses able to be allocated to more than one Article if relevant. Within the identified Articles, an inductive method was used to generate mutually exclusive subthemes to further determine the most prominent ideas (Saldaña, 2009). These subthemes were developed when multiple children spoke of priorities and experiences that related to the one Article but where each emphasized different meanings. For example, two children may have spoken of the importance of education, which the research team aligned with Article 24 on education. Focused coding was required here to differentiate one child’s enjoyment of attending school as a key to her future, as compared to another child’s experience of exclusion from school and his desire to attend. These subthemes provide a more accurate portrait of children, highlighting particular localized experiences within the universal Articles of the CRPD. After completing this analysis, quantification of the number of children identifying each Article’s subtheme was generated for each country and for both countries combined. A gender analysis was also conducted to determine whether frequency changed according to gender. In this way, localized ideas could be collated to provide a rich picture of experiences and priorities by country and gender (see Jenkin et al., 2017a).

Examining one Article in the CRPD in detail helps illuminate this process and exemplifies how localized meanings extend and reinterpret the parameters of universalized human rights. Article 23 ‘Respect for Home and Family’ relates to ‘marriage, family, parenthood and relationships’ with five separate subclauses (United Nations, 2006). Inductive coding identified a range of subthemes:

  • Support to family/better life for family,

  • Acknowledgement of special relations,

  • Animals and pets (as family members),

  • Family life, rituals and activities,

  • Future partner and children,

  • Parents keep child safe,

  • Care from family.

These subthemes (Table 1) explained the importance of family for children with disability, particularly emphasizing the special relationship children with disability have with their parents, grandparents or siblings, frequently depending on them for care and support. Many children value this level of care and support and reciprocate these special relationships by prioritizing them as the most important in their lives. This is also evident in their desire to contribute to the future economic security of the family that may also reflect their experience of poverty and associated difficulties. Additionally, children identify that pets and animals play a special role as companions and even friends, often in a context where children also report exclusion from social activities. Overall, the valuing of family life and home places (like the kitchen), as well as a desire to be part of important family cultural activities, is given primacy by some children. For a minority, children also envisaged being independent of their birth family, being able to work and live away from family or to partner and have children of their own as part of a marker of adulthood. The breadth of these subthemes extend understandings of the human rights entitlement to ‘family life’, exploring and explaining the elements that constitute children’s lived realities, that are current priorities and that may need further support (via income or social supports, employment preparation, etc.) to enable them to be maintained or attained.

Table 1.

Children’s Subthemes for Article 23 Respect for Home and Family. 5

Subtheme Selection of Responses from Children with Disability (Vanuatu and PNG)
Support to family/better life for family I want to own my own truck business one day so that I can help my family and my community. I really think that if I earn money, my family will be happy and that their lives will be easier. (Takataveti is a nine-year-old girl with a physical disability living in rural Vanuatu.)
When I finish school, I want to get a job working in an office so I can earn some money and help my grandmother and father. My grandfather and mother are getting older and I think earning money at my job will make my family have support in terms of finance. (Monique is an eight-year-old girl with a cognitive impairment, living in rural Vanuatu.)
When I become bigger, I want to become a house girl so that I can fetch water to wash clothes that are dirty, wash dirty plates, and do other activities that a house girl is doing and be able to help my mother. (Cicilia is an 11-year-old girl with a cognitive impairment, living in rural Vanuatu.)
Acknowledgement of special relations The most important things in my life are my mother, father, brother and sister and my families that surround me with care and love. They are really important because I need help moving, going to the toilet and some other activities. If I can’t do something – like reach my beads, I call out to one of my family or friends and they come and help. (Aipine is a 14-year-old girl with severe physical impairments living in a peri-urban location in a remote island of Vanuatu.)
I feel insecure as my grandparents won’t be around to care for me in the future. (Laila is an 18-year-old girl with a physical impairment in rural PNG.)
Animals and pets (as family members) Feeding chickens is something that is very important to me because I like the way the chickens are my friends. (Cicilia is a 11-year-old girl with a cognitive impairment, living in rural Vanuatu.)
Family life, rituals and activities, home place I think that my kitchen is also very important because the whole family uses the kitchen as a place for eating and telling stories and talking about plans to be carried out during the day or week. (Ser is a 13-year-old boy with low vision in a rural and remote location in Vanuatu.)
The picture illustrates one of the most important things in my life – because the juice [or paint] from the fruit is used in traditional paint during custom ceremonies. I often take part in custom ceremonies because my father and mother are custom dance performers and my father performs a lot of different types of custom activities. (Farah is a 10-year-old boy with a physical disability in peri-urban Vanuatu.)
Future partner and children I want to have a partner. That’s the only important thing in my life. I am a grown up and need a partner. (Laila is an 18-year-old girl with a physical impairment in rural PNG.)
Parents keep child safe My parents keep me safe from dogs. (Ranya is a 12-year-old girl with low vision in peri-urban Vanuatu).
Care from family Bruce really likes spending time with his mum more than anything else because she spends so much time with him teaching him things and cares for him in a very special way. She understands everything he says and his needs and wants. And Bruce recognizes that. [Explained through assisted interpretation of communication] (Bruce is a 10-year-old boy with a cognitive impairment, living in rural and remote island in Vanuatu.)
Stay away/be independent from home I want to stay away from home, working like my brother. (Idesah, 18-year-old girl with physical impairment in rural location of PNG)

Overall, children’s priorities were broad and covered most of the Articles within the CRPD with data aligned to their family, home, play, friends, school, health, cultural traditions, poverty, transport, education, employment, sports and music. While, overall, a sense of child agency was common across both countries, with children envisioning a future of productive employment and contribution to their families and communities, children also spoke of significant barriers and disadvantages including hunger, poverty, abandonment, inadequate housing, victimization and exclusion. Children frequently described how their own agency was supported rather than compromised by the interdependence between families, communities and individuals. Both ‘agency’ and ‘disability’ are potentially re-interpreted in this context, where interdependency is normalized. This offers a specific lens through which to read and re-interpret human rights for children with disability in such contexts.

Using the CRPD as an analysis framework was also, to some extent, an investigation to ascertain whether it adequately encompassed the breadth of children’s experiences. The data did fit albeit with a few exceptions. These exceptions were related to the importance of God and spirituality (mostly within PNG), along with their relationship to nature and the environment. These domains were subjectively assessed by the research team to not be present in the CRPD. Further work is required here to understand the capacity of the CRPD as a coding framework for analysing children’s life experiences if it doesn’t cover the full extent of children’s priorities, hopes and concerns. It could be argued that the CRPD should be expanded to incorporate these priorities.

Using Findings to Influence Change at a Variety of Levels

This research produced self-reported data of life experiences and human rights priorities for these traditionally non-represented cohorts in Vanuatu and PNG. Acknowledging the value of these data, it was important that findings were widely distributed in forms that were accessible in Vanuatu and PNG and more widely. Amplifying the voices of these children was a critical criterion of success for this research project. As such, a number of dissemination modes were used to ensure that these data were available to the children themselves and their communities, policymakers in Vanuatu and PNG, donors, and international aid agencies, researchers and the wider general public. These modes included direct feedback to children and communities, short films, peer-reviewed articles, book chapters and conference presentations. Access to and accessibility of these modes was also a key outcome.

For change to occur at the local level of children’s lives, it was decided to use children’s language and stories to feed back these findings to child participants, their families and their communities (see Jenkin et al., 2016). A major strategy in this regard was the commissioning of three short films (two in Vanuatu and one in PNG) that presented both the stories of children, along with commentary from local researchers with disability. 6 Sharing the children’s findings through storytelling in their own language was in line with Melanesian cultural forms of knowledge transfer and felt to be a relevant format to challenge oppressive beliefs and practices towards disability (see Jenkin et al., 2016). In this way, social change occurs in line with decolonial and community development principles (Ife, 2013) using methods in harmony with indigenous ways of knowing, communicating and being. Films were initially shown in local events that blended guest speakers (some children, parents, dignitaries, community leaders and researchers) with film showings, including all versions of the film, both captioned and audio-described. For most attendees, this was a unique opportunity to hear children with disability speaking their views in their own language (including sign language) and, for some, the accessible versions of the films offered a first experience to be equally able to engage in such events. During these occasions, the language of rights was introduced by DPO leaders as speakers (both within the films and as part of speeches at the events), but predominantly the language and concepts remained those expressed by children. The films were subsequently shown via online media to a wider audience, as well as screening as part of human rights film festivals, and at several United Nations and Australian government events, evidencing their resonance with wider issues and human rights activities.

Retaining the frame of human rights at a universal level, by understanding children’s localized priorities through a human rights lens, can enable the provision of human rights data as reported by children themselves that is useful for local and national governments and civil society. Using the language and concepts of human rights, in this case the CRPD, offers a mechanism to leverage policy and connect to advocacy at a global level. It provides governments with tangible data to work with that is embedded in the local, an evidence-based method to developing policies and programmes with children with disability’s involvement as well as connecting to governments’ international obligations. It also provides leverage to DPOs who can advocate children with disability’s key priorities in DPO awareness campaigns, their advocacy for disability inclusive policy to government and their shadow reporting to the United Nations. This frame supports the voice of children with disabilities to influence change upwards, from local through to global mechanisms. Such an analysis highlights Nguyen et al.’s (2015) observation that knowledge construction by children with disability can be a critical tool in rights monitoring. For example, one of the major recommendations for both countries was the need for families to access social protection due to the significant hardship the child participants identified as experiencing. Recommendations, such as this one, were shared with both governments and a major donor to both countries through local project reports and policy briefs that reported children’s priorities and concerns aligned with Articles within the CRPD. 7 In addition, human rights findings have been incorporated into Vanuatu’s alternative report to the CRPD committee.

Conclusion

Children with disability are clearly a cohort which is vulnerable to exclusion and being ignored when discussions around human rights are held. It is necessary therefore to actively find ways to allow children to present their own stories in their own voice, relating to their own contexts. Techniques that give them control over this conversation are core to progressing understanding of and action on locally defined human rights priorities.

The rights-based approach applied in this project responded to the critique of the universality of the CRPD by seeking to utilize it in a contextualized and localized way, engaging with children around open-ended questions framed within everyday language, and drawing on both local and universal meanings as part of data analysis and in presenting findings to influence change. This requires an appreciation of local context and developing approaches that allow people (children in this instance) with disability to control the interpretation or translation and prioritization of human rights. Such an approach has potential to bolster the local capacity to enable and protect the rights of children with disability, giving life, meaning and strength to the CRPD. The research presented in this chapter provided a means by which the local could be honoured in a meaningful way that helps to aid understanding, bring about social change, and aid social inclusion via utilizing and blending both local and universal meanings in relation to human rights. In doing so, there can be a stronger connection between children with disability, their family, community, policymakers and service designers and thus a greater likelihood of inclusive and enabling action occurring. The continued use and evolution of such methods provide significant opportunities to extend dominant approaches to rights-based research.

Notes

1

Whilst the CRPD committee has made recommendations to States about matters concerning children with disability (such as institutionalization) (McCallum & Martin, 2013; United Nations, 2015), the authors cannot find evidence of where children with disability were consulted in any methodical way.

2

The process for developing tools is described in Jenkin et al. (2015).

3

Despite being initially selected as representing an Article of the CRPD, each photo (and sound or object) was able to connect with diverse interpretations of children. For example, a photo of a plantation might evoke discussion of food, employment or, as for one ni-Vanuatu girl, a discussion of the child’s absent father whom she missed.

4

A further iteration of this idea in an Australian adult disability context was the commissioning of adults with disability to take photos within their environment that represented CRPD Articles for the compilation into a photo library to support adults with disability to discuss their life priorities. See http://picturemyfuture.com/wp-content/uploads/2013/05/1547_DEAK_PMFB-picturemyfuturebook_A4_v4_Web.pdf

5

All names are pseudonyms.

6

The films can be viewed online at http://www.voicesofchildrenwithdisability.com/films/

7

Final reports for Vanuatu and PNG with recommendations are found at http://www.voicesofchildrenwithdisability.com/resources/

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Prelims
Section 1 Social Inclusion: Affirming Value, Rights and Choice
Social Inclusion and Belonging: Affirming Validation, Agency and Voice
Segregation versus Solidarity: Rethinking the Uncritical Commitment to Inclusion
Fostering Social Inclusion of Youth through Joint Action
Nurturing Hope, Sense of Belonging and Engagement through Equity
Section 2 Social Inclusion and Schools: Programs, Perspectives and Practices
Developing and Promoting Inclusion from Kindergarten to University
It Takes a Team: How One Family Paved a Path Toward Inclusion
Learning from Children: Experiences of Bullying in Regular Classrooms
‘He seemed a little lost soul’: Family Insights into the Reality of Realizing Inclusive Education for a Child with a Disability
Inclusive Practice in Nigerian Classrooms
Section 3 Securing Presence: Dignity, Agency and Voice
Bridging the Local–Universal Divide of Human Rights Research: Voices of Children with Disability in Developing Countries
Assessment, Curriculum and Literacy Practices to Develop and Support Social Relationships in a New Zealand Primary School
Honouring, Constructing and Supporting Neurodivergent Communicators in Inclusive Classrooms
Hear All about It: A Family’s Perspective on Social Inclusion and Hearing Loss
Section 4 Transition to Higher Education and Employment
It’s Not All about Coursework: Narratives of Inclusion and Exclusion among University Students Receiving Disability Accommodations
Creating Communities in Which Everyone Belongs: A Case Study in Supported Decision-Making
The Self-determined Career Design Model: Supporting Young People with Developmental Disabilities and Their Families in Home and Community Settings
Employment as an Integral Part of Social Inclusion: The Case of Mental Health Patients in Greece
Index