Disability Research and Education.
The Donald Beasley Institute is a national, independent, non-profit organisation based in Dunedin, New Zealand.
Plain English Summary
People with high and complex support needs are often not seen or heard. They find it difficult to be part of the community and to meet people and make friends. Because some people with high support needs can’t talk, they don’t always get to take part in research.
This project was about finding a way for people with high support needs to tell us about their lives and the things that were important to them.
The project helped us to understand how we can make sure that people really become part of their communities and have their human rights met. It also showed us that all people with learning disabilities can take part in research – we just need to take the time to find the best way for them to tell their story.
About the research
Narrative researcher Jane Baron once famously wrote that “the people who most need to have their stories told are often least able to tell them.” People with high and complex support needs must surely number amongst the population of lost voices and yet, in terms of the human rights discourse it is critical their voices are heard. This is especially true for Article 19 of the United Nations Convention on the Rights of Persons with Disability.
Disabled New Zealanders have consistently identified social participation as their pre-eminent human rights issue. More than twenty years after dismantling New Zealand’s long-stay care facilities, disabled people continue to name their absence from the institution of friendship alongside the difficulty they experience accessing the ordinary places people live, work and play as marginalising them from the social worlds that define community and articulate modern citizenship. Article 19 of the United Nations Convention on the Rights of Persons with Disability (the “Convention” or "UNCRPD") seeks to promote and protect disabled people’s right to live independently and be included in the community. Until we hear from those most likely to be exposed to an abuse of these rights we can not, however, be said to have had a complete conversation about the progress New Zealand is making toward realising its human rights obligations.
In 2012, CCS Disability Action commissioned the Donald Beasley Institute to conduct research that reflected on the ability people with high and complex support needs have to access their right to live and participate in their community. Drawing from the narrative research tradition, twelve people with high and complex support needs were offered a range of different research methods to generate the conversations they felt they needed to write their life-story whilst exercising control over the way they were present to their researcher/co-author. Twelve individual narratives, “jointly told” were used to (contestably) draw conclusions about the ability people with high and complex support needs had to access the rights codified in Article 19.
Contrary to the Convention, people’s stories revealed a life trajectory shaped by resistance to or eventual acceptance of the one living arrangement they perceived open to them. Few people recognised home ownership, living alone or sharing a small household with others they chose as a right readily translatable into their own lives. Most participant/co-authors were similarly absent from the social contexts from which other New Zealanders typically derive a sense of participatory membership. Their community tended to be experienced on the margins of community life in public spaces like the supermarket or café, gym, swimming pool, boche hall or two-dollar shop. Almost all participant/co-author’s friendship fields were dominated by family and/or support staff. Beyond the intimacy of those relationships, however, most others tended to be context bound and fixed at the level of acquaintance.
An important difference was also observed in the way disability support services and families read the support role. Whereas the customs of service provision tended to prioritise connecting people to places, families tended to understand the support role as connecting people to people. This difference in the understanding of support was coincident with a social construction of disability formed either side of a line that has always defined who is “in” or “out” of common community. When support was delivered within a relational ethic of social closeness, co-authors had an opportunity to transform their communities into places that recognised sameness including their shared right to belong. When support was delivered outside of a relational ethic of social closeness, co-authors tended to remain “out of place” in communities that continued to see difference.
New Zealand social policy is underpinned by the vision of a fully inclusive society. Recognising and supporting the potential of people with a learning disability to be leaders of transformative social change will be critical to achieving this vision. Recognising that the stories of the men and women who gifted them to the Article 19 Project represented a clear challenge to the disability sector, CCS Disability Action has used the research as a call to action. The Article 19 Project provided the unifying theme to the national inter-sectorial “Gathering,” and has acted as the springboard to a parliamentary briefing and national email and postcard campaigns initiated by CCS Disability Action. Following interest generated by dissemination at a number of national and international conferences, the Article 19 Project has also been adapted in response to disability service providers' request for staff training.
Dissemination of research findings
Staff/Training / Community Development
CCS Disability Action research related advocacy