Dr Mark Priestley and Dr Parvaneh Rabiee
Centre for Disability Studies
University of Leeds
UK
This page is now complete - last updated April 2002.
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We sought to highlight the role of self-advocacy groups in giving greater voice to older disabled people in policy debate. We also hoped to challenge academic and policy practices that separate the needs of ‘older’ people and ‘disabled’ people, despite the commonality of many of their concerns. In this way the projectfurthers the process of bridge building between related, but traditionally separate, fields of enquiry.
We aimed to provide a basis for future research by examining the representation of older people's claims to social inclusion, from a disability rights perspective. Working with local groups representing older people, and in consultation with national organisations, our research focuses on the following questions:
Older people have increasingly organised themselves to campaign on issues of equality in areas such as access to health and social care, housing, income and employment (e.g. Carter & Beresford 2000). Social scientists have also become increasingly interested in the experience of ageing (Townsend 1981; Phillipson et al. 1986; Fennell et al. 1988; Phillipson 1998) and in the policy implications of an ageing society (Hughes 1995; Phillipson & Walker 1986; Disney 1996; Bernard & Phillips 1998). Alongside these developments, we have seen the emergence of a strong movement of disabled people, campaigning for choices and rights on many similar issues (e.g. Barnes 1991).
While there is some considerable overlap in the issues on which older people’s groups and disabled people’s groups have campaigned, the ways in which they have represented apparently similar claims differ. For example, where the UN Year of Older People envisages a ‘society for all ages’, disabled people’s groups have sought to create an ‘enabling society’. Where disability groups have campaigned for ‘accessible housing’, older people’s groups have advocated ‘housing for life’. Where older people’s groups have objected to ‘do not resuscitate’ (DNR) decisions based on age, disabled people’s groups have highlighted the withholding of life saving treatment for people with impairments. Where older people’s groups have argued over ‘cold weather payments’ on grounds of age, disabled people’s groups have made claims for recognition of the ‘additional costs of impairment’. There are numerous parallel examples in relation to social services, transport, environmental access, health care and so on.
Although the differences between the representations and discourses used to legitimise similar claims may appear small, they suggest an underlying distancing of older people’s claims from those of ‘disabled’ people (and vice versa). National organisations for older people (such as Help the Aged and Age Concern England) have launched campaigns for greater rights in relation to hospital treatment, inclusive housing and quality of life. Yet, few of these campaigns make explicit reference to disability rights issues.
Disabled people’s groups have made considerable advances in claiming their rights – for example, through the 1995 Disability Discrimination Act and the new Disability Rights Commission. However, progressive disability policies continue to emphasise the needs of younger people rather than older people (Eurolink Age 1995; Walker & Maltby 1997; McLellan 1997; Walker & Naegele 1999). For example, Government policies (like Labour’s ‘New Deal’) and public debates about disability rights have been preoccupied with issues of employment (Priestley 2000). Yet, most disabled people are over retirement age. Implementation of the new Human Rights Act will present many opportunities for older people and disabled people to find common ground in the struggle for greater access and equality.
Methods
The methods involved a literature and policy review on disability and ageing, focussed on examples that specifically highlight older people’s claims to social inclusion in the UK. The emphasis was on the representations and discourses used to legitimise such claims, particularly within the context of self-advocacy and lobbying. We sought to identify priority policy issues and to contextualise these within our existing knowledge of the disability studies literature.
Initial fieldwork contacts focussed on 72 local older people's groups, to establish more details about their role and function within the communities that they support or represent. For this, we used a brief postal questionnaire, asking about: the community that the organisation represents or serves; the aims and objectives of the organisation; their current priority issues of concern; their specific involvement with older disabled people and disability issues. We also asked for copies of relevant documents (constitution, publicity leaflets, issue based working papers etc.).
The detailed fieldwork involved visits and key informant interviews with 21 organisations, in which we consulted on issues of concern and on the kinds of discourses that older people’s groups are using to represent their claims. In particular, we sought to draw out the way in which discourses of generation, disability and normality are employed or obscured to legitimise particular collective claims to social inclusion.
Indicative Reading
Arber, S. and Evandrou, M. (1993) Ageing, independence and the life course, Jessica Kingsley
Barnes, C. (1991) Disabled People in Britain and Discrimination: a case for anti-discriminatory legislation, Hurst & Co.
Barnes, C. (1997) Older People's Perceptions of Direct Payments and Self-Operated Support Systems, Disability Research Unit, University of Leeds
Bernard, M. and Phillips, J. (1998) The social policy of old age, CPA,
Carter, T. and Beresford, P. (2000) Age and change: models of involvement for older people, York Publishing Services
Disney, R. (1996) Can we afford to grow older? A perspective on the economics of aging, MIT Press
Eurolink Age (1995) The European Union and Older Disabled People, Eurolink Age
Fennell, G., Phillipson, C. Evers, H. (1988) The sociology of old age, Open University Press
Hockey, J. and James, A. (1993) Growing Up and Growing Older: Ageing and Dependency in the Life Course, Sage
Hogg, J. (1988) Ageing and Mental Handicap, Croom Helm
McLellan, D. (1997) Framework for the qualitiative and quantitative analysis of data on the ageing of people with disabilities, Council of Europe
OECD (1996) Ageing in OECD countries: a critical policy challenge, OECD
Phillipson, C. (1982) Capitalism and the construction of old age, Macmillan
Phillipson, C. and Walker, A. (Eds) (1986) Ageing and Social Policy: a critical assessment, Gower
Phillipson, C., Bernard, M. and Strang, P. (1986) Dependency and interdependency in old age: theoretical perspectives and policy alternatives, Croom Helm in association with the British Society of Gerontology
Phillipson, C. (1998) Reconstructing old age: new agendas in social theory and social practice, Sage
Priestley, M. (1999) Disability Politics and Community Care, Jessica Kingsley
Priestley, M. (2000) Adults Only: disability, social policy and the life course, Journal of Social Policy, 29(3): 421-439
Townsend, P. (1981) The structural dependency of the elderly: the creation of social policy in the twentieth century, Ageing and Society, 1, pp. 5-28
United Nations (1983) Vienna International Plan of Action on Aging, UN, New York, USA
United Nations (1991) Principles for Older Persons, United Nations
United Nations (1999) General Assembly Resolution A/RES/47/5, 42nd plenary meeting
Vincent, J. (1999) Politics, Power and Old Age, Open University Press
Walker, A and Maltby, T (1997) Ageing Europe, Buckingham, Open University Press
Walker, A. and Naegele, G. (Eds) (1999) The politics of old age in Europe OUP
Walker, A. and Walker, C. (1998) Normalisation and 'Normal' Ageing: the social construction of dependency among older people with learning difficulties, Disability and Society, 13: 125-142
Zarb, G., Oliver, M. and Silver, J. (1990) Ageing with Spinal Cord Injury: the right to a supportive environment?, Thames Polytechnic/Spinal Injuries Association
Zarb, G. and Oliver, M. (1993) Ageing with a disability: what do they expect after all these years?, University of Greenwich
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