Philosophy and profound disability: learning from experience

Abstract

Reflection on profound and multiple learning difficulties and disabilities raises a series of questions in moral and political philosophy, a claim supported by philosophical argument but also given credence by human testimony, some examples of which are presented here. I introduce three young people with profound learning disabilities, before presenting testimony on their behalf, organised so as to coincide with a series of related philosophical questions about human dignity, respect, citizenship and dependency. I suggest that there are implications that apply to all people and not only to those with profound learning difficulties.

Keywords:

• profound learning difficulties
• parents
• experience
• philosophy
• dignity
• respect
• dependency
• citizenship

Acknowledgements

The author would like to express sincere thanks to Philip and Rachel Barker, Tilly Thompson, Mark and Trish Blundell, Asma Begum and Dr Mathew Rayner (Head of the Stephen Hawking School, which Inaaya attends and at which I conducted my interviews with Asma). The author would also like to thank Clare, Inaaya and Christiejane: Clare for the many hours I spent in her home; and all three for all that I learned from hearing about their lives.

Notes

1. Significant contributions include Kittay (2005) and Silvers (1995). See also Vorhaus (2005, 2006, 2007); some philosophical material in these papers is summarised here.

2. The research instrument used here was a semi-structured interview. All participants gave full consent, both to the interview and to the publication of testimony included in the transcript, having read and approved the final draft. In addition, all respondents waived the right to anonymity; they wished their full names and those of their daughters to be included in the text. When given an opportunity to re-consider, each interviewee insisted on the use of real names, taking the view that this was in the best interests of the children, that too little is known about their lives, and that the text is designed to promote understanding of living with profound disabilities. The fact of re-iterated and unanimous insistence seemed decisive; nevertheless, the question of consent is particularly sensitive and complex, and there is perhaps no wholly satisfactory resolution of the difficulties that arise in this area.

3. An alternative view is that dignity attaches to the treatment that human beings should be accorded. For extended discussion of the concept of dignity, see Vorhaus (2005).

4. The concept of dependency deserves more discussion than I can provide here, including, in particular, in relation to interdependence and independence. See Vorhaus (2007).

5. See also the work of the Independent Living Movement.