Disability World
A bimonthly web-zine of international disability news and views, Issue no. 7 March-April 2001

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Request for information from Northern Ireland

This request was originally posted to the disability-research-request@mailbase.ac.uk listserv by Nicolas Achesonn (N.Acheson@ulst.ac.uk)

Hello all,

I wonder if anybody would care to comment on what to me is a rather surprising finding in my current research into contemporary voluntary action around disability.

Evidence from a survey I have just completed of voluntary organisations in Northern Ireland whose main interest in in some sense connected to disability shows clearly that there has been a trend away from philanthropy and care towards participartory organising in which disabled people are themselves much more likely to be in leadership roles and towards social/environmental/political change goals.

Thus far, thus unsurprising. However, contrary to the disability movement paradigm, where differences based on specific illnesses or impairments are downplayed and where organising tends to be around a reclaimed identity as a disabled person, this new form of voluntary action tends to be based around single impairments and there is very little evidence of new identity-based organisations emerging.

The typical new type organisation is thus based on a single impairment (e.g., fibromyalgia), has a mixed membership consisting in people who have the condition, their carers, interested able- bodied professionals (eg anybody interested in the condition and what are perceived to be its effects), primarily has a self-help orientation where experiental rather than expert knowledge is valued, and where usually but not necessarily, the people with the condition are in formal control.

So far as Northern Ireland is concerned, it is evident that many more disabled people are engaged in this type of voluntary action rather than in identity-based groups such that drive the disability movement as a social movement elsewhere.

My question and apologies for the rather long introduction - is this? How typical is this pattern elsewhere, and does anybody know of any work being done on the relationship between such illness focussed self-help and identity-based voluntary action among disabled people? Is the former a basis for the latter (eg is there evidence of people moving in their analysis through involvement in such self-help)? Does such self-help ever become a resource for identity-based action and if so in what circumstances? In other words is Northern Ireland simply behind the times, or is the balance of participatory voluntary action on a different trajectory?

Any thoughts, comments, ideas etc. welcome.

Nick Acheson,
Centre for Voluntary Action Studies,
University of Ulster.

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