The Agony and the Inspiration: Professionals' Accounts of Working with People with Learning Disabilities

Professionals' accounts of working in challenging service environments bring into relief the tensions they experience in their work. An ethical dilemma where the wellbeing of a severely or profoundly learning disabled (LD) and highly dependent person is at stake is conceptually and emotionally challenging to those responsible for finding some resolution. This report develops the findings of empirical research described in an earlier paper on professionals' experiences of addressing serious ethical issues within their work with people with LD. We attempt to make clear how the ethical and policy frameworks to which they are accountable, their personal desire to improve the lives of people with LD and the relational aspects of their work raises strong feelings that make the work, at times, intolerable and at other times richly rewarding. Regardless, being in relation to the person with LD is prerequisite to making changes in their lives; therefore, the relational as well as procedural aspects of services provided by professionals need to be theorised. We offer a critique of these professionals' perspectives based on a distinction between instrumental and substantial rationalities, the latter being relatively absent in the managerial and scientific discourses within the NHS. This absence risks dehumanising clients and professionals and neglecting what is core to their work: the privilege of being with unique others, bearing witness to their histories and supporting them to live their lives.