Understanding How Disabled Persons Negotiate in the Practice of Informal Family Support

This study filled a gap in disability theory related to persons with physical disability (herein PWPD)’s negotiations for informal support in the complex, power-imbalanced relationship of family. To summarize the problem under study: • For some PWPD, support is both formal and informal; • This means PWPD negotiate either as consumer, as ‘care recipient’ in hands of family who define ability, or both; • The unequal power and conflict in the relationship between PWPD and unpaid family support person is rarely investigated, and there’s a theory gap; • Disabled people know: “When you ask people to help, you know there’s kind of a limit.” – Alice Wong, disability advocate; and • Does this relationship build social capital that is becoming the replacement trend for formal support? While disability studies has advanced theory accounting for support as ‘a gift,’ there is a ‘social debt’ narrated by disabled persons when asking for support. Disability studies has yet to critically examine and theorize ‘social debt,’ or conditions under which reciprocity in family relationships presumed to be capital-creating act as debt-relieving. As policy trends seek to ‘operationalize’ disabled persons’ social capital and networks in place of formal supports, it is important to theorize how social networks can reproduce unequal relations of power and capital. This study centers the voices of PWPD negotiating for informal supports in family relationships to understand the process of negotiating in order to advance theory on this social process. This study aligns a critical research lens with Constructivist Grounded Theory (herein “CGT”), using qualitative methodology with participant-driven data collection via Flip-based video narrative diaries followed by in-person individual interview(s) of nine participants, born between 1942 and 1999, spanning life course stages. The study explores three main areas: (1) the content included by PWPD when constructing narratives about informal supports; (2) the principles that guide, techniques employed, and value sought by PWPD when negotiating for informal supports compared to formal support; and (3) the capital value of social relationships that have become the substitute for formal supports. Results indicate self-structuring a narrative diary about informal supports is valued and valuable, that PWPD’s negotiations for informal family support are a dynamic-dependent constellation of contingencies, steeped in feelings that include indebtedness, blurred lines between informal and formal acts, near preclusion of a ‘no-deal’ option, and deep gratitude. These aspects coincide with voiced preference for control through formal supports, but did not usually coincide with discontinuing the adult informal support relationship absent an alternative. An exception to seeking informal support is risk of harm to valued relationships, to aging parents, or the disabled person for violation, minimization, or interruption of their transition to adulthood. Finally, most acts of reciprocity served a debt-relieving intention. From a careful explanation of specific events and actions of PWPD emerges an interpretive, grounded theoretical construct “social debt” that cuts across the life course (Charmaz, 2014). Results of this research have implication for expanding research to use participant-led data gathering to uncover hard-to-see structures, to understanding underlying structures of PWPD’s access to satisfying supports, and to help impact policies implemented in the name of economic reason to remove rather than build structural inequality barriers to formal supports for persons with physical disabilities.