We did it together: a participatory action research study on poverty and disability

Abstract

This article presents the perspective of both non-disabled and developmentally disabled people working together in a research project on poverty and disability. Our study used a participatory action research approach that challenges the norm of exclusion in the research process. Control of the research agenda has been inclusive and shared to varying degrees in accordance with the needs and desires of the members of an advisory committee of developmentally disabled people living with low income. We reflect on our process of working together according to four principles of participatory action research with disabled people. We discuss our successes and challenges enacting these principles in the hopes that future researchers can build upon our experience to be more inclusive of developmentally disabled people in their work. Points of interest• This article presents the perspective of both non-disabled and developmentally disabled people working together in a research project on poverty and disability. • Our study aimed to help raise the voices of developmentally disabled people living with low income and support the development of poverty-reduction strategies to meet their needs and priorities. • In this paper we discuss how we worked together to develop the research project, conduct focus groups, analyze results and use what we have learned to raise awareness and help make change in relation to poverty and disability issues. • We reflect on our process of working together according to four principles of participatory action research with disabled people to describe our successes and challenges.

Realising the value of knowledge resources and capabilities: an empirical study

“…Based on the premise that 'knowledge is power', it may be that knowledge management and process capabilities can be used at the regional, national or transnational levels to effect change that will have positive social, environmental and economic outcomes (Laszlo & Laszlo, 2002). For example, knowledge management and information sharing have been shown to significantly influence the management of poverty and disability (Buettgen et al, 2012). Likewise, the ability for stakeholders to share knowledge and engage in an informed discourse was a key driver in Iceland's response to the global financial crisis of the 2000s (Duffy et al, 2017).…”

Challenges facing online research: Experiences from research concerning cyber-victimisation of people with disabilities

“…It was adopted with people having disabilities due to its values of empowerment and contribution to social change (Nind & Vinha, 2014). It challenges exclusion in the research process by involving people with disabilities to develop the research project, conduct and analyse data in a continuous cycle of learning (Buettgen et al, 2012). Participatory research was also used to create accessible instruments for individuals with developmental disabilities (Nicolaidis et al, 2015).…”

Strategies to Promote the Inclusion of Young Adults With Developmental Disabilities in Community-Based Health Studies

“…Recruitment of people with a variety of types and levels of disabilities may be a challenging task for research teams. Buettgen et al (2012) explain the technical (lack of tools) and administrative (project deadlines, lack of time) difficulties in recruiting participants who do not use words to communicate. These were the factors that were considered before making the decision to opt to only select self-advocates who used words to communicate.…”

“…Although people with disabilities experiences socioeconomic and health inequities, they are underrepresented in research that aims at proposing policy recommendations and practices to promote equal opportunities and inclusion (Hall, Durand, & Mengoni, 2017). Buettgen et al (2012) state that “there is a link between the way that research in the developmental area has been conducted and the disenfranchisement of developmentally disabled people” (p. 604). Historically, voices of disabled persons in research about them have been excluded and oppressed (Barton, 2005; Castrodale, 2018), and ableist practices have been embedded within qualitative research (Lester & Nusbaum, 2018).…”