Final Report Summary - NAVIGATING STIGMA (Navigating Stigma: People with Intellectual Disability Creating Inclusive Communities)
‘Navigating Stigma’ was comprised of 3 interdependent research strands guided by the overarching question, How do people with disabilities navigate stigma to create sustainable relationships at home, at work/school, and in their communities?
Strand 1 (Qualitative Interviews)
The first strand involved creating a database of qualitative interviews highlighting how people with disabilities in Ireland navigate stigma in their lives. This strand attended to diverse experience of people with disabilities in Ireland, while highlighting the how stigma intersects in their lives. Over 90 interviews are included in this qualitative archive. Participants were 20-65 years of age and had varied disability experiences (e.g. multiple sclerosis, epilepsy, amputation, intellectual disability, mental health diagnoses, wheelchair users, acquired brain injury). To date one paper has been accepted for publication with another currently under review from within this archive.Ten graduates have presented their work at local and national conferences. A series of narrated powerpoint slides will be posted on the university website, researcher’s wordpress site, and distributed to relevant organisations. The potential for social impact from this strand of the CIG will gradually be realised. With 30 health professional graduates involved in this project there is an opportunity to positively influence local policy and practice to (1) reduce stigma related to disability and (2) facilitate greater social inclusion. For example, we will convene a planning meeting in autumn 2016 for all researchers and participants to establish an agenda for action based on key issues highlighted within the database.
Strand 2 (International Case Studies)
This strand involved 3 international case studies based on the experiences of people with intellectual disabilities moving from institutions to community living. This project brought together the perspectives of self-advocates and practitioners/policy makers in the Republic of Ireland (2013-2014), Nova Scotia, Canada (2013-2014) and Northern Ireland (2014-2015). A total of 32 interviews with self-advocates describe the complex process of moving to the community from congregated settings across these jurisdictions. Another 26 interviews with policy makers and service providers map out the policy landscape that shaped these experiences. The in depth accounts of all participants highlighted pivotal moments and relationships that enabled people with intellectual disabilities to move to and also live well in their communities. A multi-step approach to knowledge translation was employed whereby participants remained actively in control of how their stories were represented visually. These accessible, visual accounts are being compiled into an e-book due for release autumn 2016. This project broght together perspectives of people with intellectual disabilities and practitioners (service providers, policy makers, academics) about the transition to community living across 3 case studies. This provides deep and nuanced accounts about how social policy shapes the lives of people with intellectual disabilities. Additionally, a multi-step approach to knowledge transfer was employed where people with intellectual disabilities actively engage in developing accessible accounts of their life stories. After each interview, an easy-read summary was written and images incorporated that highlighted pivotal moments/relationships in the move to community. The final version of the accessible visual story was reviewed and agreed with participants. These graphic accounts will be compiled into an e-book by December 2016. Initial social impact from this project was realised in spring 2014 when case summaries were presented back to disability organisations. Links are established between innovative service providers in all three countries with potential of staff exchanges and North/South funding in Ireland high on the agenda for 2016/17.
Strand 3 (Research Active Programme—RAP)
The third strand of this project, the Research Active Programme, informed the whole study. In spring 2012 RAP started as an 8 week pilot that included fourteen students with intellectual disabilities learning how to become co-researchers. RAP2 was delivered in spring 2013 at 2 different universities in Ireland as a full module. There are over 60 RAP graduates. Additionally, 5 peer mentors with disabilities held leadership roles, co-facilitating RAP sessions with over 10 academics or service providers. RAP built the research capacity within and self-advocates and across a range of service providers as we learn together and practice socially responsible, inclusive research. This curriculum is now embedded in the Inclusive Research Network, a group of self-advocates, supporters and academics who work together on research projects that respond to issues prioritised by people with intellectual disabilities in Ireland. In 2012 the findings from the first RAP module were presented at the national Association of Occupational Therapists of Ireland conference. Subsequently two articles based on evaluation were published in Learning Disability Practice. Preliminary findings of the RAP evaluation were presented at the Nordic Network for Disability Research Conference (2013) and subsequently published (2015). All session plans, powerpoint slides and learning activities from RAP2 are available online http://researchactiveprogramme.wordpress.com. The work on RAP and with the Inclusive Research Network established a connection with colleagues at University of Girona. In 2015 the Marie Curie Fellow was a visting scholar at UdG. During this week long visit she delivered invited talks and worked with colleagues to support the fledgling Inclusive Research Network in Spain. In one presentation the Research Active Programme curriculum was introduced (video available at: http://diobma.udg.edu/handle/10256.1/3833). The second keynote address described the history, structure and support within the Irish Inclusive Research Network (video available at: http://diobma.udg.edu/handle/10256.1/3287). These links are accessible through the website of UdG Institute of Educational Research: www.udg.edu/ire.
Engaging in all 3 strands of this project established a solid research network and foundation for future research while simultaneously orienting the fellow to the breadth of the disability experience in the Irish context. The richly textured in-depth case studies highlight connections and contrasts that enable self-advocates, policy makers and service providers in Ireland and Nova Scotia to learn collaboratively through cross-cultural engagement.
Strand 1 (Qualitative Interviews)
The first strand involved creating a database of qualitative interviews highlighting how people with disabilities in Ireland navigate stigma in their lives. This strand attended to diverse experience of people with disabilities in Ireland, while highlighting the how stigma intersects in their lives. Over 90 interviews are included in this qualitative archive. Participants were 20-65 years of age and had varied disability experiences (e.g. multiple sclerosis, epilepsy, amputation, intellectual disability, mental health diagnoses, wheelchair users, acquired brain injury). To date one paper has been accepted for publication with another currently under review from within this archive.Ten graduates have presented their work at local and national conferences. A series of narrated powerpoint slides will be posted on the university website, researcher’s wordpress site, and distributed to relevant organisations. The potential for social impact from this strand of the CIG will gradually be realised. With 30 health professional graduates involved in this project there is an opportunity to positively influence local policy and practice to (1) reduce stigma related to disability and (2) facilitate greater social inclusion. For example, we will convene a planning meeting in autumn 2016 for all researchers and participants to establish an agenda for action based on key issues highlighted within the database.
Strand 2 (International Case Studies)
This strand involved 3 international case studies based on the experiences of people with intellectual disabilities moving from institutions to community living. This project brought together the perspectives of self-advocates and practitioners/policy makers in the Republic of Ireland (2013-2014), Nova Scotia, Canada (2013-2014) and Northern Ireland (2014-2015). A total of 32 interviews with self-advocates describe the complex process of moving to the community from congregated settings across these jurisdictions. Another 26 interviews with policy makers and service providers map out the policy landscape that shaped these experiences. The in depth accounts of all participants highlighted pivotal moments and relationships that enabled people with intellectual disabilities to move to and also live well in their communities. A multi-step approach to knowledge translation was employed whereby participants remained actively in control of how their stories were represented visually. These accessible, visual accounts are being compiled into an e-book due for release autumn 2016. This project broght together perspectives of people with intellectual disabilities and practitioners (service providers, policy makers, academics) about the transition to community living across 3 case studies. This provides deep and nuanced accounts about how social policy shapes the lives of people with intellectual disabilities. Additionally, a multi-step approach to knowledge transfer was employed where people with intellectual disabilities actively engage in developing accessible accounts of their life stories. After each interview, an easy-read summary was written and images incorporated that highlighted pivotal moments/relationships in the move to community. The final version of the accessible visual story was reviewed and agreed with participants. These graphic accounts will be compiled into an e-book by December 2016. Initial social impact from this project was realised in spring 2014 when case summaries were presented back to disability organisations. Links are established between innovative service providers in all three countries with potential of staff exchanges and North/South funding in Ireland high on the agenda for 2016/17.
Strand 3 (Research Active Programme—RAP)
The third strand of this project, the Research Active Programme, informed the whole study. In spring 2012 RAP started as an 8 week pilot that included fourteen students with intellectual disabilities learning how to become co-researchers. RAP2 was delivered in spring 2013 at 2 different universities in Ireland as a full module. There are over 60 RAP graduates. Additionally, 5 peer mentors with disabilities held leadership roles, co-facilitating RAP sessions with over 10 academics or service providers. RAP built the research capacity within and self-advocates and across a range of service providers as we learn together and practice socially responsible, inclusive research. This curriculum is now embedded in the Inclusive Research Network, a group of self-advocates, supporters and academics who work together on research projects that respond to issues prioritised by people with intellectual disabilities in Ireland. In 2012 the findings from the first RAP module were presented at the national Association of Occupational Therapists of Ireland conference. Subsequently two articles based on evaluation were published in Learning Disability Practice. Preliminary findings of the RAP evaluation were presented at the Nordic Network for Disability Research Conference (2013) and subsequently published (2015). All session plans, powerpoint slides and learning activities from RAP2 are available online http://researchactiveprogramme.wordpress.com. The work on RAP and with the Inclusive Research Network established a connection with colleagues at University of Girona. In 2015 the Marie Curie Fellow was a visting scholar at UdG. During this week long visit she delivered invited talks and worked with colleagues to support the fledgling Inclusive Research Network in Spain. In one presentation the Research Active Programme curriculum was introduced (video available at: http://diobma.udg.edu/handle/10256.1/3833). The second keynote address described the history, structure and support within the Irish Inclusive Research Network (video available at: http://diobma.udg.edu/handle/10256.1/3287). These links are accessible through the website of UdG Institute of Educational Research: www.udg.edu/ire.
Engaging in all 3 strands of this project established a solid research network and foundation for future research while simultaneously orienting the fellow to the breadth of the disability experience in the Irish context. The richly textured in-depth case studies highlight connections and contrasts that enable self-advocates, policy makers and service providers in Ireland and Nova Scotia to learn collaboratively through cross-cultural engagement.