The Longing to Be: Social Inclusion, Citizenship and Be-longing
Few would argue that it is the relationships that we have with other people that give our lives meaning and purpose. Not only do we come to have a sense of who we are though relationships, giving and receiving inside relationship connects us to those we love. It also connects us with all of the communities that express who we are and where we rightfully belong. Three research collaborations recently conducted by the DBI have changed the way we now think about inclusion and have helped us to reimagine human rights as intimately connected with our sense of belonging.
The Community Participation Project: People with disabilities finding their place
In the Community Participation Project, disabled and non-disabled researchers collaborated with people who used New Zealand vocational services to learn more about how they understood the policy aim of “community participation.” We were also interested in the range of ways disabled people were (and were not) connected to people and to places in their community.
The research documents the distinctive geography of disabled people’s lives, including describing how traditional support practices steer people towards a narrow range of “authorized” public spaces in ways that leave disabled people known well by no-one and on the very margins of participatory citizenship.
What disabled people told us, however, was that it wasn’t so much “where” people were that counted, but “how” people were in place that mattered most. From their observations, the research team was able to identify five key attributes of relationship disabled people said were elemental to a sense of belonging – providing us all with a new way to think about and to map geographies of ex/inclusion.
Click here for the report, or here for the reference for a journal article based on this study that, over the past decade, has become the third most viewed paper published by Disability & Society at 20,012 views.
“I am here”: The Article 19 Project
Almost a decade after the Community Participation Project, CCS Disability Action commissioned the DBI to conduct a descriptive research project to make transparent the day-to-day lives of New Zealanders with high and complex support needs. Of concern to CCS Disability Action was that the voices of New Zealanders at greatest risk of not being able to access their UNCRPD Article 19 right to be included in the community were the least likely to be heard. The aim of the Article 19 Project was to assist people with high and complex support needs to story their lives in a way that would allow them to say, “I am here.”
The Article 19 Project, is a landmark project, not just because it provided what Atkinson and Walmsley described as the “lost voices” of disability research a chance to speak for themselves, but because of the way they were permitted to control how they were present in the research. The research team created space for people to develop ways of gathering and telling their story that folded around their bodies, level of trust and motivation for participating. This approach has come to be known as Individually Responsive Methods and is a radical departure from traditional research methods.
Reading across the stories revealed that people with high and complex support could not live in a place of their own choosing and were also largely unable to access their right to be supported in ways that promoted inclusion or prevented isolation or segregation within the community. Storytellers typically ghosted into public places chaperoned by staff in highly programmed, task focussed and time constrained entrances and exits making it next to impossible to develop intimate and reciprocally valued relationships. Similarly, those who lived more independently were also not visible within their community in ways that would allow them to say “I am here.”
Click here for the “I am here report” or go to the Community Participation section of the website for more publications based on this research.
"Getting the Life I want"
One of the most important ways people feel connected and contributing members of their community is through their employment. The impact of having or not having a job also spills over into all other life domains. Health researcher Dr Ewan McDonald, for example, estimated the damage to health associated with unemployment is equivalent to smoking 200 cigarettes a day. Studies carried out by the DBI and by Statistics New Zealand suggest that around eight out of every ten disabled people without work would like paid employment, with those most likely to be steered away from employment as an outcome being most sensitised to their unemployment.
To many disabled people, getting a job is an important part of getting the life they want. As part of an organisational commitment to tailor support in ways that assisted people to get the lives they wanted, CCS Disability action commissioned a project that blended three strands of empirical research. Disabled people informed the “Getting the life I want” project via a national online survey that sought to learn more about their support priorities and vocational experiences. Key Informant interviews were also conducted as a way of listening to the aspirations disabled people held for themselves and the ways they thought vocational support either helped or hindered their efforts to get the lives they wanted. An Integrated Literature Review was also conducted to ensure that any future response to the project’s research findings aligned with evidenced based best practice.
The results of all three research strands have been made accessible by CCS Disability Action via the DBI website to promote a sector wide response to disabled people’s aspiration to access employment and other valued forms of community participation. Click here to access the reports.
Project Artwork by Sasha Wells