Has Social Policy Challenged or Continued Personal Experiences and Understandings of ‘Disability’? A qualitative study of people with Intellectual Disabilities. I: Social Policy Association International Conference, Social Policy in the Spotlight: Change, Continuity and Challenge

Background
Diagnostic labels can impact identity-formation and quality of life for individuals with intellectual disabilities (ID) (Gillman, Heyman, & Swain, 2000). The understanding of the term ‘disability’ to those who experience the ramifications of its clinical and political definition, however, has rarely been explored in depth. Similarly, whilst stigma is a well-studied phenomenon in this population (e.g. Szivos-Bach, 1993; Abraham et al, 2004), few studies qualitatively explore these issues. In the light of specialist social policies for people with ID such as Valuing People (2001) and Valuing People Now (2009), which foster rights, independence, choice and social inclusion, this study aimed to develop an understanding of how adults with ID experience their own disability and how this impacted their self-esteem, social interactions and stigma. The objective was to illuminate a functional definition of ‘disability’ by those living with ID which may act as a reference point for advocates, practitioners, researchers, and policy-makers. The study addressed the following research questions:
• How do adults with ID interpret ‘disability,’ and does it relate to their understanding of their own disability?
• How do adults with ID compare themselves to typically-developing individuals and other individuals with ID?
• Do adults with ID prefer to associate themselves with those with or without ID?
• To what extent does the understanding of disability effect self-esteem in this population?
Method
This small, exploratory study used semi-structured open-ended interviews. Fifteen adults with ID capable of giving informed consent and currently attending an adult day service (a working farm open to the public) in the United Kingdom participated in one-on-one interviews spanning 10-45 minutes. Interpretive Phenomenological Analysis (Smith, Flowers and Larkin, 2009) was used to understand the idiographic experience of the participants while critically engaging with common themes across their accounts.
Results
Three primary themes were identified following analysis of the transcripts. The first of these addresses the way in which participants conceptualised how to behave, namely by seeking “normal” appearances and comparing themselves favourably against peers with ID. Secondly, participants seemed to develop their own understanding of disability based on a series of intrinsic factors—such as actual cognitive or physical impairment—and extrinsic pressures. Finally, the sample displayed limited, partial, or incorrect understandings of common disability terminology as well as discomfort with the entire line of enquiry.
Conclusions
The implementation of a new national minimum social care eligibility threshold this April (Care Act 2014) may mean changes to accessing social services for many individuals with ID. The impact of this regulation on identity and self-esteem presents a unique challenge during the transition period; an individual who primarily compares himself to other individuals with ID may need increased emotional support if transitioning out of ID-specific social services. Additionally, developing a better understanding of how individuals with ID conceptualise themselves and others is imperative for continuing to ensure genuine person-centred planning (DoH 2001; 2009) within a potentially new era of social care provision.