I would of thought that this simply reflects the continuing medicalisation
of impairment in contemporary society.
In addition, it also reflects how people see themselves - particularly
those with chronic illnesses. When I was secretary for such a group in
liverpool many years ago, the pattern you describe was there also - the
organisation was led by people with that condition, and used words linked
to the conditions latin name and medicalisation of impairment, like
I only hope that in time this will change and that people will see the
similarities between chronic illness and disability as is popularly
Then we can move away from 'charity' to far more dignified, useful and
personally fulfilling forms of help. That is not to knock self-help groups,
but to me they perpetuate the marginalisation and misunderstanding of
everyday life and the experience of chronic illness to the individuala and
society and culture at large.
At 14:47 10/10/00 GMT, NICHOLAS ACHESON wrote:
>------- Forwarded message follows -------
>From: NICHOLAS ACHESON <[log in to unmask]>
>To: [log in to unmask]
>Subject: chronic illness, self-help and the disability movement
>Date sent: Tue, 10 Oct 2000 14:44:37 GMT
>(apologies for cross-posting)
>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
>The typical new type organisation is thus based on a single
>impairment (eg 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.
>thanks for your patience,
>Centre for Voluntary Action Studies,
>University of Ulster.
>------- End of forwarded message -------