Intellectually disabled people as participant citizens
Mark Burton, Melanie Chapman, Anna Fedeczko, Richard Hughes, Jackie Kilbane, Tom McLean and Pat Ashworth
Manchester UK
Paper Given at the Fourth International Conference on Liberation Social Psychology / psicología social de la liberación, Universidad San Carlos de Guatemala, Guatemala City, November 2001
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Intellectually disabled people are typically one of the most oppressed minorities in all places. They tend to have little access to the political process, or to means of influencing the exercise of power by others.
Issues in enabling a greater critical participation will be reviewed and illustrated by an action research project to influence the decision making in a British public service context.
Implications for work with other oppressed minorities will be discussed.
Personas con discapacidades intelectuales como ciudadanos participantes
Mark Burton Melanie Chapman, Anna Fedeczko, Richard Hughes, Jackie Kilbane, Tom McLean y Pat Ashworth
Manchester, Bretaña
Personas con discapacidades intelectuales son vistas normalmente como uno de los minoritarios los mas oprimidos por todos lugares.
Tienden tener muy poco acceso al proceso político, o a los recursos para influir el ejercicio del poder por los demás.
Se tratan algunas cuestiones en respecto al conseguir de una más alta participación critica. Se ilustran por un proyecto de investigación-acción con el objetivo de influir la toma de decisiones en el contexto de un servicio publico británico.
Se discutirán las implicaciones para trabajos con otros minoritarios oprimidos.
This paper concerns the second theme of the congress: citizen participation and the widening of democracy, in respect of a minority that is typically oppressed in all social systems - people who are intellectually disabled.
The marginal status of intellectually disabled people has been described by commentators in the English literature (e.g. Wolfensberger, 1970, 1992; Burton and Kagan, 1996; Burton, 1983; Goodley, 2000). Their relative powerlessness can be attributed to a combination of impairment (difficulties in learning, in dealing with language, and in working with abstract concepts), and the disadvantage imposed societally, both ideologically and structurally. Historically, intellectually disabled people have been seen as childish or as threatening, have been segregated from others and often congregated together, have been poorly supported socially, been seen as not experiencing an emotional life, and denied the exercise of power and influence over their circumstances. More recently, however, there has been a greater awareness of their rights and potential contribution, with at least a rhetoric that encourages their greater participation and empowerment (e.g. UK Department of Health, 2001).
It is possible to describe the societal situation of intellectually disabled people using a framework from the social psychology of liberation. Blanco's 1993 scheme is presented in figure 1, and adapted for the special circumstances of intellectually disabled people in figure 2. Similarly, some key concepts of Martín-Baró's work are listed in table 1, together with additions necessary in relation to work with intellectually disabled people.
The participation of intellectually disabled people is an interesting test case for the social psychology of liberation. It requires alliances between disabled and non-disabled people, together with a reflexive understanding by the able partners of the ever-present potential to reproduce the conditions of marginalisation, exclusion, and manipulation. It requires the development of democratic processes that include those that have least natural ability to articulate their interests or to organise collectively. This implies not least the search for methods that do not depend on spoken language.
None of this means the abandonment of well-known frameworks for the understanding the development of critical consciousness (e.g. Freire, 1972, 1994; Martín-Baró, 1985; Kane, 2001), but the methods require adaptation and contextualisation, the pace will be slower, and the nature of these processes is hereby illuminated.
We and others have worked on these issues in a variety of ways (see Goodman, 1998). We have become wary of a focus on the least disabled people, who can speak up with relative ease, and most recently have worked with a diverse group of people who use public services in Manchester. Most use some degree of spoken language as well as gestures, but one uses gestures and sounds and another has an electronic communication aid. A full report of this work can be found at:
http://www.nwtdt.com/pdfs/tqrep.pdf
Some of the key issues encountered and lessons learned are now listed. While they are couched in terms of facilitating a group of intellectually disabled people who use the public service in which we work, we believe they could have a wider relevance, that is also not restricted to people who are intellectually disabled.
Working to enable the critical participation of people with significant intellectual impairments highlights some of the barriers to participation that may also apply to other marginalised and oppressed groups (e.g. people with sensory or physical, people from other linguistic communities, people who have been severely traumatised, children, or elderly people). Careful thought and the creative development of methods is required so that through enaction and discussion of important issues and through collective action to try and resolve them, people who are severely disadvantaged can develop a more critical consciousness of their situation and its determinants, and of the possibility of change. This is a minimum requirement for the authentic broadening of democracy.
References
Blanco, A. El desde dónde y el desde quién: una aproximación a la obra de Ignacio Martín-Baró. Comportamiento, 2, (2), 35-60.
Boal, A. (1979) Theatre of the Oppressed London: Pluto Press
Burton, M. (1983) Understanding mental health services: theory and practice. Critical Social Policy, 7, 54-74.
Burton, M. and Kagan, C.M. (1996) Rethinking empowerment: shared action against powerlessness. In I Parker and R Spears (Eds.) Psychology and Society: Radical theory and practice: London: Pluto Press
Department of Health (UK) (2001) Valuing People. White Paper, London: Department of Health.
Freire, P. (1972) Pedagogy of the Oppressed. Harmondsworth: Penguin.
Freire, P. (1994) Pedagogy of Hope. New York: Continuum.
Goodley, D. (2000) Self-advocacy in the lives of people with learning difficulties. Buckingham: Open University Press.
Goodman, K. (1998) Service user involvement. In Mark Burton and Mike Kellaway (Editors) Developing and Managing High Quality Services for People with Learning Disability (1998) Aldershot: Ashgate.
Kane, L. (2001) Popular Education and Social Change in Latin America. London: Latin America Bureau.
Martín-Baró, I. (1985) El papel del psicólogo en el contexto centroamericano. Boletin de Psicología de El Salvador 4, 99-112. Reprinted: Boletín de la AVEPSO, 12, (3), 1989, 6-17, and in A Blanco, (ed.) Psicología de la Liberación. Madrid: Trotta, 1998. Reprinted in translation by A Aron, as The role of the psychologist. In A Ron and S Corne (eds.) Martín-Baró, I. 1994) Writings for a Liberation Psychology. Cambridge Mass./London, Harvard University Press.
Wolfensberger, W. (1975) The Origin and Nature of Our Institutional Models. In Changing Patterns in Residential Services for the Mentally Retarded Washington: President's Committee on Mental Retardation.
Wolfensberger, W. (1992) A Brief Introduction to Social Role Valorization as a High-Order Concept for Structuring Human Services. (rev. ed.). Syracuse, N.Y.: Training Institute for Human Service Planning, Leadership and Change Agentry (Syracuse University).
Table 1
Martín Baró’s work |
Work with learning disabled people |
|
Same, plus concepts of societal devaluation Social model of disability |
|
Could or do use similar methods ? |
|
Work to elicit ratings of service quality ? |
|
Similarly, work of various types with survivors of individual or institutional abuse. |
|
Facilitation and encouragement of People First and similar self advocacy groups. |
[ Traducción
Obra de Martín-Baró |
Acción con la gente discapacitada |
|
Igual, con conceptos de la devaluación societal y del modelo social de la discapacidad. |
|
Se podría utilizar, o ya se utiliza, métodos similares. |
|
¿Trabaje para sacar grados o conseguir conocimiento de la calidad del servicio? |
|
Semejantemente, trabajo de varios tipos con los sobrevivientes del abuso individual o institucional. |
|
Facilitación y estímulo de los grupos como People First (En Primer Lugar, Somos Personas) que se abogan. |
Figure 1: Framework from Blanco, 1993
Figure 2: Blanco’s schema amended to describe the situation of intellectually disabled people.