European policy promotes inclusion in education and society for disabled people (Inclusion Europe, 2020). Debate continues about how educational inclusion should be approached, but generally people with and without disabilities share an experience of formal education. This is not the case for employment, especially for people with intellectual and developmental disabilities across Europe. Most have little or no experience of paid work (Inclusion Europe, 2020), though it occupies a large proportion of adult life for the majority, and is a key means by which social participation is realised (Gheaus & Herzog, 2016; Yeoman, 2014). Exclusion therefore has extensive implications beyond the question of earnings, especially in terms of social and cultural learning and inclusion (see Bjarnason, 2002). Since decades of policy and legal effort have failed to raise employment levels for people with intellectual and developmental disabilities (De Jong, 2011; Sainsbury, 2018), I focus on work that is unpaid. 

In the UK and in other high-income countries, policies of ‘personalisation’ have become established in disability services in recent decades. These purport to promote the autonomy of disabled people. Personal budgets, for example, aim to offer recipients greater ‘choice and control’ over their lives and the support they receive (Power et al., 2009). For people with intellectual and developmental disabilities, personal support is paramount for such agency to be realised (Fish & Morgan, 2021; Mladenov, 2012; Power et al., 2021). This policy context enables young people with significant intellectual and developmental disabilities to secure dedicated personal support - a Personal Assistant - to enable them to work. This study explores the sociocultural learning and inclusion processes that take place in these circumstances.

The study understands inclusion to depend on active processes of sociocultural participation (Clifford Simplican et al., 2015; Lysaght et al., 2017). It draws on participatory theories of learning (Billett, 2004; Lave & Wenger, 1991; Rogoff, 2003) which view cultures as formed from the efforts of people working together, and as shaped by the characteristics of those taking part. On this basis, the study explores qualitatively learning and social inclusion in relation to the work of five young people with intellectual and developmental disabilities, from their own perspective and according to those with whom they live and work.

First participants were video recorded at work to capture their activities and interactions. Collaboratively edited clips of the video acted as a resource to stimulate and support discussion with young people, their Personal Assistants, co-workers and key supporters. Semi-structured interviews concerned how participants evaluated the role of work in their lives, their learning of work-related skills and knowledge, how they understood the wider social and cultural context of their activities, and the reciprocal learning embedded in the social interactions and relationships of work.

Video-supported interviews showed the work placements to be a significant source of learning for young people and those they worked with. People readily identified work-specific skills and knowledge; instances of wider social and cultural learning, and of learning by co-workers and supervisors, emerged in the course of discussion. People working with participants valued the work done by them and recognised significant contributions to shared goals. They gained insight into the strengths and capacities of young people, while recognising the formidable obstacles to formal employment.

The findings support the importance of working roles in developing agency and furthering participation in and understanding of life beyond family and ‘sheltered’ disability environments.  These examples of sustainable working situations suggest how work roles can contribute towards greater social inclusion. They demonstrate too the limitations of policy that focuses on (unattainable) employment as the means to social inclusion and societal benefit.  

Five young people with intellectual and developmental disabilities were recruited. Each was engaged in unpaid work of their own choosing, fitted to their interests and strengths, and worked with a PA. For each participant, the PA, a co-worker or supervisor and a key family supporter, usually a mother, were also recruited. Video methods were used to record participants at work. Three to six hours of recording were made per participant, across several different occasions, to include regular tasks, interactions with co-workers and public, and work with and without PA support. The video was reviewed and segmented into short chunks in collaboration with the participant with intellectual and developmental disabilities and made available to all participants to review (using a private video channel) as they wished. Collaboratively selected video clips were reviewed by participants prior to and during interview sessions, which were conducted using an adapted form of Video Stimulated Recall Reflection and Dialogue (VSRRD; see Nind et al., 2015) with each participant separately. These sessions were also video recorded, to show the video under review alongside the discussion concerning it. This method enabled participants with intellectual and developmental disabilities to observe themselves at work, while supporting their attention, memory of events and communication skills in interview. Video clips also offered concrete illustrations for discussion in relation to the abstract themes of learning and social inclusion. Importantly, the filming of interviews allowed participants’ non-verbal behaviour to be recorded. All video and transcripts of video were uploaded to NVivo for thematic analysis. Deductive and inductive thematic coding took place iteratively, focusing on learning and mutual accommodation between young people and those they encountered at work, and the role of the PA in supporting this.

Work was perceived to be a significant dimension in young people’s lives, even when hours worked were low, and was the only or main occasion for young people to be active outside family and disability settings. Positions were maintained for a number of years, giving time for cumulative learning and mutual accommodation to take place. By engaging with the sociocultural tools, goals, problems and social arrangements of their work, participants developed their knowledge, skills and understanding to different degrees, while establishing some common ground with others. The data give detailed examples of the kinds of work-related knowledge and skills gained, and of how working contributed to wider social and cultural learning by young people. Co-workers and supervisors perceived young people to be making significant and socially useful contributions to shared goals. They discussed young people’s work with insight into personal capabilities and challenges, suggesting that work had provided an effective setting for participants to represent themselves. PAs provided individually-tailored practical, psychological, and learning support. There was a consensus view that such support made work viable and sustainable. The findings support the idea that learning, work, and social inclusion may be interdependent processes, as implied in social and participatory accounts of learning. The examples explored show the potential of ‘fitting’, PA-supported work to motivate such learning by people with intellectual disabilities and those they work with. The examples studied indicate the potential value of well-fitted work to extend learning and shared experience between people with intellectual and developmental disabilities and those they work with. Policy to promote supported work of the kind explored here could moderate the divide in lived experience between the working majority and people with intellectual and developmental disabilities while employment remains inaccessible.

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