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

--->>>Resumen en español

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.

 

  1. The existence of such a group does not absolve providers of services from the responsibility to involve and consult people in other ways. It is important that participation is embedded throughout the running of the service.
  2. It takes time to establish a group of this sort, and decisions made in its establishment should not be regarded as final. It is important that wherever possible, those organising and facilitating the initiative should include at least one disabled person.
  3. It is important to establish whether the group is meant to be representative in some way, or whether the members simply speak for themselves (of experiences and needs that are also likely to be typical).
  4. The size of the group may be critical to enabling participation, and the presence of those facilitating or giving practical support (of whom there may need to be more than one) also needs taking into account.
  5. Recording what went on is important to enable continuity, planning, and memory: since the majority are unlikely to be literate (and some may have visual impairments), alternative methods will be required.
  6. It is useful to consider how the non-disabled participants will help get the group's perspectives onto the relevant agendas. Where the group feels it is not being heard, there will be a need to develop tactics of communication and persuasion.
  7. People may need help with practicalities such as travel, eating and drinking (if refreshments are served), using the toilet, and behaving appropriately: it helps to be aware of and address such personal assistance requirements that can act as a barrier to involvement.
  8. There are dangers of conflict of interest if those who facilitate or otherwise provide help to the group are also those involved in the direct provision of services to the disabled participants. As the group develops, roles will emerge, and it is important to find ways of supporting people to exercise these. The facilitator(s) will need to be sensitive to the power relations that develop in the group, and the way these can reproduce those in the immediate and wider social context.
  9. Complex, abstract ideas (e.g. choice, control, dignity, rights and so on) can be difficult to explain. It can be difficult to stimulate and sustain verbal discussion. Role-play and other drama techniques (cf. Boal, 1979) and various art media, as well as more conventional group facilitation methods are useful resources.
  10. It is sometimes helpful for the group to meet with people in positions of power or influence. It is, however, important to be aware of visitors' motives for coming, and to ensure they are briefed on what is expected of them (e.g. use of accessible language).
  11. Given that the participants will have difficulties in cognitive processing, and at first be unfamiliar with the process of exploring topics, forming views, and making decisions, it is important to realise that exploring an issue can take more than one meeting, if this is to be done more than superficially.

 

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

  1. Critical use of social psychological concepts, in conjunction with ideas from social theory. Anglo-american social psychology subjected to a careful analysis and critique - ideas culled from it (e.g. work on socialisation, identity, prejudice), but put into a broader societal framework.

Same, plus

concepts of societal devaluation

Social model of disability

  • Freirian use of generative words and themes
  • Could or do use similar methods ?

  • Public opinion research
  • Work to elicit ratings of service quality ?

  • Work with war traumatised children: simultaneous work with post-traumatic stress and work to remove the causes
  • Similarly, work of various types with survivors of individual or institutional abuse.

  • Support for popular organisations to enable the oppressed to emerge from the sidelines and articulate their interests.
  • Facilitation and encouragement of People First and similar self advocacy groups.

     

     

    [ Traducción

    Obra de Martín-Baró

    Acción con la gente discapacitada

    1. Uso crítico de conceptos psicológicos sociales, conjuntamente con ideas de la teoría social. Psicología social angloamericana sujetada a un análisis y crítica - las ideas tomadas de ella (pe. trabajo sobre la socialización, la identidad, el perjuicio), pero pusieron en un marco social más amplio.

    Igual, con conceptos de la devaluación societal y del modelo social de la discapacidad.

  • El uso de palabras y temas generativas de manera de Freire.
  • Se podría utilizar, o ya se utiliza, métodos similares.

  • La investigación de la opinión pública.
  • ¿Trabaje para sacar grados o conseguir conocimiento de la calidad del servicio?

  • Trabajo con niños traumatizados por la guerra: trabajo simultáneo con el estrés poste-traumática y trabajo para quitar las causas.
  • Semejantemente, trabajo de varios tipos con los sobrevivientes del abuso individual o institucional.

    1. La respalda para las organizaciones populares para permitir que el pueblo oprimida emerja de los márgenes y articule sus intereses.

    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.