Researching belonging with people with learning disabilities: Self‐building active community lives in the context of personalisation

Abstract

Accessible Summary We wanted to understand more about how people with learning disabilities are building active community lives to help belonging. We spoke to 39 people from 29 different support organisations, 7 local authority representatives and 43 people with learning disabilities. They said belonging was about having the time to connect with other people in “everyday” places, being part of a supportive network and having the right choice and information. Belonging is like a cake. It needs the right ingredients. These ingredients include the right combination of people, places and times. Because of cuts to funding, many people with learning disabilities lack the right support, choice and information to access their communities. This is not belonging. Abstract BackgroundThis journal article draws on findings from a research project that examined how people with learning disabilities and their allies were seeking to build a sense of belonging. We wanted to focus on the concept of “belonging” in the context of personalisation and reduced government social care funding. Specifically, we sought to understand how people with learning disabilities and their supporters were coming together to “self‐build” networks of support including friendship clubs and self‐advocacy groups to enable a greater sense of belonging in their local communities. MethodsQualitative interviews were conducted with seven local authority representatives across four case study areas in the UK, as well as 39 staff across 29 organisations providing a range of day and evening support and activities. We also talked to 43 people with learning disabilities across the four areas about their experiences. FindingsOur findings demonstrate how belonging involves a complex configuration of actors, places, times, relationships and institutional roles (much like the ingredients in a cake). The ways in which belonging intersects with agency and choice was also identified as an important and novel finding of our study. ConclusionWhile belonging is often presented to people as a desirable and realisable outcome of social inclusion policies, cuts in funding and a lack of appropriate support frustrate people's desires to meaningfully belong with other people in their local community. This demonstrates the importance of supporting social environments that meet people's needs for social connectedness and belonging.

Researching belonging in the context of research with people with intellectual disabilities: A systematic review of inclusive approaches

“…All the other articles used labels which distinguished group members with and without intellectual disabilities (see Table 3). Three studies referred to researchers with intellectual disabilities as a group, reference group (Koenig, 2012), and advisory group (Kaley et al, 2021; Martin et al, 2021). The remainder of the articles used individual role designations for team members with intellectual disabilities; co‐researchers (García Iriarte et al, 2014; Rojas‐Pernia et al, 2020), consultants (Renwick et al, 2019; Robinson et al, 2020), self‐advocates (Frawley & Bigby, 2015), and participants (Heffron et al, 2018; Power & Bartlett, 2018; Wilton et al, 2018; Witsø & Hauger, 2020).…”

“…Feeling included in the wider society was important to people with intellectual disabilities (García Iriarte et al, 2014) and this sense of inclusion applied in a range of social environments (Heffron et al, 2018). People with intellectual disabilities in the reviewed studies identified relationships as key to belonging (Haigh et al, 2013; Renwick et al, 2019; Robinson et al, 2020; Rojas‐Pernia et al, 2020) and particularly relationships with family and friends (Kaley et al, 2021; Witsø & Hauger, 2020), and relationships within self‐advocacy groups (Frawley & Bigby, 2015). It was also found that mobile technology increased social inclusion with family and friends (Martin et al, 2021).…”

“…Mutuality and reciprocity in social relations was an important enabler to a sense of belonging (Milner & Kelly, 2009). The significance of relational spaces like friendship groups was noted (Kaley et al, 2021; Power & Bartlett, 2018). Renwick et al (2019) acknowledged the importance of engaging in social relationships, and belonging was found to be enhanced when those connections were positively experienced (Robinson et al, 2020).…”

“…Physical environments were important (Heffron et al, 2018) and several studies identified that activities undertaken in particular locations were central to a sense of belonging (García Iriarte et al, 2014; Haigh et al, 2013; Power & Bartlett, 2018; Wilton et al, 2018; Witsø & Hauger, 2020). Disability‐specific spaces were considered important (Dias et al, 2012), including self‐advocacy groups (Frawley & Bigby, 2015; Kaley et al, 2021), as were mainstream community spaces like shopping centres (Wilton et al, 2018).…”

“…A total of 689 participants with intellectual and developmental disabilities were included across the studies. Studies were concentrated in English‐speaking countries, United Kingdom (Dias et al, 2012; Haigh et al, 2013; Kaley et al, 2021; Mooney et al, 2019; Power & Bartlett, 2018), Ireland (García Iriarte et al, 2014), Canada (Renwick et al, 2019; Wilton et al, 2018), United States (Heffron et al, 2018), Australia (Frawley & Bigby, 2015; Martin et al, 2021; Robinson et al, 2020), New Zealand (Milner & Kelly, 2009). Only three studies were conducted in non‐anglophone countries, Austria (Koenig, 2012), Norway (Witsø & Hauger, 2020), and Spain (Rojas‐Pernia et al, 2020).…”