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WELCOME TO ALL FELLOW CAMPAIGNERS for DISABILITY RIGHTS - a pan disability blog connecting my work with, EQUAL LIVES, the National Survivor User Network (NSUN) and the Survivor History Group.
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Protest, Norwich Job Centre

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Fatso Gets Militant!

Tuesday, 21 January 2014

Survivor News 21/01/14

Jasna Russo has written an important review of the book Patsy
Staddon edited on "Mental Health Service Users in Research: Critical
Sociological Perspectives" Policy Press. The review was published in
Disability and Society and I am not allowed to circulate my
downloaded copy to everyone on the list.

I have copied the text of the review to you below.

Some of you will have access by University libraries for an original
copy, but most survivors will not. A limited number of copies are
available if you copy and paste this address into the address line of
your browser.

http://www.tandfonline.com/eprint/mwF4TQ32fxMfTsIacES2/full

If you cannot get a copy, Jasna or I are allowed to pass a copy on to
you individually, for private study. So let me know. Most of you will
probably find the text below adequate, even though it does not have
the formatting of the original.

Jasna's review:

This is the third book to engage with the topic of research by
academics who identify as mental health service users/psychiatric
survivors, and the first one to step clearly outside the field of
mental health and psychiatric research. Mental Health Service Users
in Research documents and extends the seminar series `Researching in
Mental Health: Sociological and Service User/Survivor Perspectives´
held at the British Library in London in 2009. The same year saw the
release of both earlier titles, also in the United Kingdom (Sweeney
et al. 2009; Wallcraft, Schrank, and Amering 2009). This proximity in
time, place and topic makes it hard not to situate this book in
relation to the other volumes. Recalling the achievement of the first
work in this trilogy (Sweeney et al. 2009), Andrew Roberts of the
Survivor History Group writes:

>From now on the sparkling water from survivor research could flow
into the dark muddy ocean of academia. (Email, 29 July 2013)

For myself, as a survivor researcher, the most sparkling aspect of
this edition assembled by Staddon is its turn away from psychiatry
towards sociology. Less cheering but no less important is the plain
insight into the unidealised picture of service user involvement in
research that this collection provides.

Given the efforts of survivor research to oppose the reductive
biomedical model and argue for a different, social understanding of
what is known as `mental illness´, the connection of survivor
research with sociology feels like a step in the right direction. In
her excellent introduction, Angela Sweeney criticises `detached
academic interpretation´ (5) and argues that `sociologists should be
uniquely positioned to engage with these survivor-generated models of
madness and distress´ (7). The 10 chapters that follow can be read as
testimonies to such an engagement. Each of these highly varied
contributions is written from a different perspective and focuses on
another aspect of that process.

Reflecting on the process of knowledge production, several of the
contributors refer to their own research projects. There is a
noticeable difference between the collaborative projects (Rickard and
Purtell; Pollard and Evans; Gillard, Turner and Neffgen) and the
survivor-controlled projects (Staddon; Carr). The latter include a
social model of alcoholism outlined by Patsy Staddon and Sarah Carr´s
account, which brings together autoethnography with survivor
research. Unlike the accounts of collaborative research, these two
contributions impressively document the full potential of research
done from a survivor perspective and the nature of the new knowledge
that opens up when this perspective does not have to justify itself
continuously in relation to the clinical one. This is not meant as a
criticism of the partnership accounts, which I value for their honest
and realistic depiction of service user involvement in academic
settings. Rather, it very much reflects my own value judgement about
how far each of these approaches can go. The chapter by Pollard and
Evans reveals the lack of even the most basic prerequisites for
collaborative undertakings within hierarchical (university) settings.
In such situations, the emphasis on the researcher´s identity and the
battle to make physical space for service users in the academy can
overshadow something at least equally as important: the shifting of
the methodologies, overall ethics and outcomes of the research
process. For example, the account by Gillard, Turner and Neffgen
comprehensively describes a process of joint analysis and
interpretation by a service user and a clinical researcher in the
study of personality disorders. While the genuine team effort to
bring the two perspectives into dialogue becomes clear, so also does
the failure to even mention the possible role of research
participants in this phase of the study.

Although they explicitly support service user involvement in
research, several contributions expose the limitations of this
concept. The chapters by Jayasree Kalathil and Lydia Lewis go beyond
research and turn to involvement in the policy context, including its
outcomes. Kalathil questions the attribute `hard to reach´ and
explores its role in justifying the under-representation of
racialised groups in involvement initiatives. She argues that `[n]o
communities are, by definition hard to reach´ (131) and makes
suggestions about how to `redefine user involvement itself´ (128).
Lewis´s chapter demonstrates how even well-intended involvement
policies can `produce their own injustices of recognition´ (93). She
introduces a human rights perspective on involvement, and like
another contributor, Hugh Middleton, emphasises the inhibiting effect
of the discourse of `mental illness´ with its unhelpful dichotomies.
Middleton himself draws a parallel between the role division in
psychiatric research and that in psychiatric treatment, likening the
role of `service user researcher´ to the `classic sick role´ (17). He
separates the often-cited therapeutic benefit of participating in
research from the legitimate question of `whether the activity has
led to new knowledge, other than participants´ understanding of
themselves´ (17; emphasis added).

I consider this to be the key issue in all efforts to change mental
health research and transform the resulting knowledge base. That the
researcher´s identity is not on its own the appropriate basis for
working towards this shift seems obvious. It is therefore sad to see
that some authors in the book pin down survivor researchers to our
experiential background. This tendency starts with the use of rather
inadequate language; for example, efforts to distinguish `service
user researchers´ from `researchers´ (Pollard and Evans). It extends
to denominating `types of service user researchers´ according to the
degree to which our personal experiences and demographics match the
topic under investigation (McLaughlin, 159-160). In his chapter on
alternative futures for service user involvement in research, this
same author warns of the `risk of replacing the tyranny of
traditional academic research practice with the tyranny of service
user-controlled research´ (164). Despite this being the weakest and
most disappointing part of the book, it is also a reminder of how
important it is to re-consider not only the practice but the whole
concept of involvement. Rather than remaining stuck in the constant
fight for more room within the pre-defined field of clinical
research, we might invest far more in working beyond its narrow
agenda. This could include strengthening both the methodologies and
the underlying theory of survivor research. The chapter by Peter
Beresford and Kathy Boxall engages extensively with exactly these
issues, and in that sense provides a counter-vision for the future of
survivor research to the one imagined by McLaughlin.

The editor of this highly diverse collection further questions the
validity of collaboration, and suggests in her closing remarks that:
[w]e will need to consider how to `take over the factory´, the means
of production, rather than be consulted as to the kind of machinery
it is best for others to use. (Marx 1967, 172)

This sounds like a logical direction for the hard but exciting
journey of survivor research, and I am already looking forward to the
book publication from its next station.

Jasna Russo

Centre for Citizen Participation, Brunel University, London, UK
contact@jasnarusso.com
© 2014, Jasna Russo
http://dx.doi.org/10.1080/09687599.2013.864873
References

1. Marx, K. 1967. Capital. Vol. 1. New York: International
Publishers.
2. Sweeney, A., P. Beresford, A. Faulkner, M. Nettle, and D.
Rose, eds. 2009. This is Survivor Research. Ross-on-Wye: PCCS Books.
3. Wallcraft, J., B. Schrank, and M. Amering, eds. 2009. Handbook
of Service User Involvement in Mental Health Research. Chichester:
Wiley-Blackwell. [CrossRef]

Best wishes, Andrew

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