Paper short abstract:

This paper considers the capabilities of people with intellectual and developmental disabilities in high income countries. I consider the impact of participating in work in the public sphere on the social inclusion of people generally excluded from employment. Exploring a group of cases and applying theories of relational agency, I consider the impact on their capabilities.

Paper long abstract:

Context

This paper focuses on the capabilities of people with intellectual and developmental disabilities in high income countries. Such people have access to income from benefits, but are highly constrained in what they are able to be and do. A significant factor in their capability deprivation is lifelong exclusion from employment. Exclusion from the activities and productivity of their societies has pervasive effects. The term ‘social exclusion’ is commonly applied but conceals some outcomes relevant to this group specifically - the limitation of social connections to family and disability services, the lack of meaningful occupations, and sparse opportunities to develop skills and knowledge across the lifespan (see Yeoman, 2014). A range of policy efforts to address extremely low employment statistics (c. 6% in the UK, NHS Digital, 2022) have been ineffective in the case of people with intellectual and developmental disabilities (Hatton, 2016; Blamires, 2014). Inclusive employment and ‘social inclusion’ remain sustainable development goals (United Nations, 2016).

Personal assistance has been proposed as a means for disabled people to reclaim an autonomous position in the public sphere, and to rethink perceptions of their ‘dependent’ status (Mladenov, 2012; 2020). It is defined as a human right in the UN Convention on the Rights of Persons with Disabilities (Article 19). If autonomy is construed as relational, disabled people can be autonomous and ‘entitled to participate in the public sphere’ (Mladenov, 2012, p .11).

Theories of relational autonomy support the significance of social participation and social policy in the development of agency. Relational theorists understand people to be relationally and socially constituted across the lifespan, with development proceeding through embodied social interaction with others, including various relations of dependency. Agency is understood to be a capacity that develops dynamically in relation to opportunity and interpersonal, social and institutional scaffolding. As with other capabilities, individual agency is ‘to a large extent’ a social achievement (Claassen, 2017, p. 1285). Theorising autonomy as social and relational may have added significance for people with intellectual and developmental disabilities, who have historically been subject to the control of others and policies of segregation (e.g., Mackenzie, 2014; 2019; Davy, 2019).

Methods

This paper explores the social dynamics of work in five contrasting cases of young people with intellectual and developmental disabilities using personal assistance to enable participation in work in the public sphere. The research uses video-stimulated qualitative methods to explore the social and learning dynamics of participation in work, as understood by the young people themselves, their families, Personal Assistants and co-workers. A collaborative approach to discussion follows the participatory ethic of the capabilities approach (Vizard & Burchardt, 2007). Multiple perspectives are taken to enrich understanding of the dynamics in complex relational arrangements (Zartler, 2010; Vogl, 2016).

Analysis

The relational role of each PA was perceived as tied to close understanding of the supported person’s existing knowledge, communication style, habits and modes of thinking. With personal support, participants with intellectual and developmental disabilities managed social contexts and tasks that were out of reach to them as individuals. At a fundamental level, having PA support made work viable. This perception held across large differences in supports needs and work contexts.

A large part of the PA role concerned support for learning. As ‘more knowledgeable others’ (Vygotsky, 1978), PAs provided significant support for learning and relational agency. Learning was also reciprocal and involved mutual accommodation, as conceived in participatory theories of learning (e.g. Rogoff, 2003, Tomasello, 2016). Co-workers adapted to the characteristics of the participant with intellectual and developmental disabilities through the PA’s modelling of modes of interaction.

Language and communication was a key area where PAs were instrumental in ‘helping the individual to negotiate the world around them and intervening in the social world to make it more accommodating’ (Davy, 2019, p. 109). One PA characterised an aspect of her work as ‘translating’ – mediating between her partner’s vocabulary and patterns of speech and people unfamiliar with them.

From the workplace perspective, PAs served a quality control function, ensuring that work undertaken was performed successfully, for example, by filling gaps in understanding, or pointing out omissions. As a result, people with intellectual and developmental disabilities were relied upon and regarded as net contributors to the work context, rather than as dependents requiring support.

Conclusions

In the lives of people with intellectual and developmental disabilities and the policies concerning them, capabilities and agency have particular significance given the history of paternalism in social arrangements and social care (Mackenzie, 2014). Research on the perceptions of people with intellectual and developmental disabilities suggests that attitudinal change in society hinges on how far shared experiences allow people with intellectual and developmental disabilities to be perceived as competent participants (Scior, 2011). These findings suggest that working with personal assistance develops competence among social co-participants.

Conceiving of support as necessary to achieving agency, rather than as evidence of a deficit of agency, enabled people with intellectual and developmental disabilities to take work in public spheres, where they could represent themselves to others as individuals and valuable co-workers. If personal assistance is to operate in the terms of relational agency, it may need to be understood as having this capacity. I argue for the value of relational agency as a concept for policy and social care, and offer a critique of ‘independence’ as a target of policy and practice.