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Disability Studies as
Ethnographic Research and
Text: Research strategies and
roles for promoting social
change?
a
John M. Davis
a
Research Unit in Health and Behavioural Change ,
University of Edinburgh, Medical School , Teviot Place,
Edinburgh, EH8 9AG, UK
Published online: 01 Jul 2010.
To cite this article: John M. Davis (2000) Disability Studies as Ethnographic Research
and Text: Research strategies and roles for promoting social change?, Disability &
Society, 15:2, 191-206, DOI: 10.1080/09687590025621
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Disability & Society, Vol. 15, No. 2, 2000, pp. 191–206
ABSTRACT This paper problematises the notion of research production within disability
studies by comparing literature on emancipatory research with concepts of re exivity,
authority and empowerment employed within ethnographic research. It critically examines
a number of proposals within disability studies on how researchers can stimulate or
contribute to processes which improve their respondents life conditions. A variety of strategies
for change are discussed within the context of how ethnographers do eldwork, and write up
and disseminate their ndings. This discussion also questions the role of the researcher and
respondent as ‘expert’, suggesting that ethnographers should not privilege their own perspec-
tives over that of respondents. It is concluded that the variety of research strategies and roles
outlined in this paper need not be mutually exclusive and therefore, that there are a number
of different yet complementary ways in which researchers can contribute to the conditions
within which self-emancipation ourishes.
Introduction
This paper critically examines the concept of emancipatory research by comparing
it to ethnographic writing on re exivity [1] and cultural exchange (Campbell, 1995).
It draws ideas from a form of post-structural ethnography (Denzin, 1997), which is
concerned with issues of authority and empowerment. The call within disability
studies for researchers to change the power relationships of the research process is
examined within the context of the role researchers adopt when collecting data ‘in
the eld’, and their responsibilities in respect of how they write up and disseminate
their ndings. [2] This examination is followed by a critical review of a variety of
strategies which might help researchers to stimulate or contribute to processes of
change which may enable respondents to improve their life conditions. It is con-
cluded that their are number of different yet complementary research strategies and
roles that enable the researcher to support disabled people in their ght against
oppression.
a story which represents the interaction between the culture of the ethnographer and
the cultures of those he/she has studied. This process is not carried out to obtain a
value free perspective, as is suggested by some phenomenologists (e.g. Phillipson,
1972), rather it is used to understand the researcher, and the respondents subjectiv-
ities, their beliefs and their ways of looking at the world (Corker, 1999b).
It is suggested that this process works best when researchers avoid getting hung
up with existing theories concerning their work. This is not to say that the ethnog-
rapher has no theoretical perspectives. Rather, that they should not hang on to
sacred cows because this may restrict the ethnographer’s ability to develop under-
standings and meanings, which eventually have a relationship with theory:
The anthropologist despite months of literature reviews, possibly years of
theoretical and comparative reading, will have to eject hypotheses like so
much ballast … The ethnographer must, like a surrealist, be disponible (cf.
Breton 1937), and open to objets trouves, after arriving in the eld! (Okely,
1994; p. 19.)
The ethnographer who begins ethnographic research with the aim to test theory or
privileges one theory over another, makes his/her ability to deal with ‘objets trouves’
problematic. In terms of disability research, this suggests that all models of disability
(medical or social) should be re exively challenged by researchers and that the role
of disability researchers should not be to t their ndings to any speci c model.
Indeed, in disability studies, the privileging of the ‘social model’ by researchers
has been criticised on the basis that the theory may not necessarily be part of the
research participants own understanding of disability (Stone & Priestley, 1996;
Priestley, 1997) and on the basis that it may inhibit the work of the researcher
(Shakespeare, 1997). By insisting on researchers adopting the social model, emanci-
patory research may restrict the intellectual freedom of the researcher, and their
capacity to interpret the worlds and cultures of others. This view is similar to that
of some anthropologists who argue, in support of Foucault, that ideology can be as
constraining an epistemology as positivism (Rabinow, 1986). Indeed, Corker
(1999a,b) argues that the social model should be viewed as one strand of an
194 J. M. Davis
emerging social theory. Corker’s views build on Oliver’s assertion that the social
model is but one aspect of a social theory of disability and that the aim of research
should be to represent disabled peoples’ lives from their own perspectives (Oliver,
1996).
This position complements that of anthropologists who argue that respondents’
beliefs should not be represented as wrong because they differ from those of the
anthropologist (Asad, 1986; Rabinow, 1986). That those beliefs should not be
patronised by being revered for their simplicity (Rosaldo, 1986).
In relation to disability studies, this suggests that respondents who do not ally
themselves overtly to a social model perspective should not be thought of as
exhibiting signs of false consciousness. Their beliefs and practices should be at-
tributed as much importance as any other disabled person. Otherwise, we run the
risk of replicating within our eld the very systems of exclusion and censorship that,
it is claimed, exist within medical model driven research. Indeed, some have raised
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concerns regarding the manner in which disabled accademics presently police the
social model (Thomas, 1998). This issue also raises speci c problems for those who
argue that researchers should put their research skills at the disposal of disabled
people (Barnes, 1992). It begs the question, which disabled people? Are we to
exclude those disabled people who do not accept a speci c social model of disability?
This same argument can be used in respect to respondent validation. It is
argued that disability researchers should feed back research ndings to their respon-
dents so that they may guide the researcher’s end text (Barnes, 1992; Stone &
Priestly, 1996). These ideas challenge the assumption that only the researcher
analyses data (Priestley, 1997). It has been suggested that asking respondents to
comment on drafts of a nal text can contribute to emancipatory objectives. [4]
Although this is a quite reasonable request, it should be noted the feedback of
research ndings does not totally disperse the authority of the researcher where the
researcher writes the nal text (Shakespeare, 1996).
Also, some sociologists employ triangulation or member validation in an at-
tempt to validate their ethnographic research (see Glaser & Strauss, 1967; Hammer-
sley & Atkinson, 1983). However, these techniques do not act as a means of
validation rather, they merely allow researchers more re exive moments:
It is the researcher’s interests and systems of relevance that will determine
the practical limits of his or her analysis (Schutz 1970). techniques of
validation provide valuable additional material for analysis and perform
further useful functions (such as easing research access), but they do not
set the bounds of the analytical task. Those bounds are set not by any
technical tests or procedures, but by a mix of relevances stretching from the
researcher’s own intellectual curiosity and scrupulousness to external con-
straints such as funding limits, supervisory stipulations and (not least)
publishing deadlines. (Bloor, 1997, p. 50.)
Even when researchers obtain comments from respondents regarding their text, they
still choose which of the respondents responses in uence the nal story and which
are ignored. Indeed, this process is no different from the earlier process of selecting
Ethnographic Research and Text 195
and interpreting data to form a text. Hence, a more achievable objective may be to
ask researchers to explain their motivations for choosing one data example or type
of explanation, over another (Hammersley, 1990). This approach may help us
follow the re exive process through which the ethnographer learns about another
culture.Some in disability studies argue against member validation for different
reasons: [5]
I was not, and am not, prepared to let other people control what I write or
dictate the appropriate political stance. In this project there was not enough
time or resources to enable people to check over the text or comment on
it. While I would always welcome advice and feedback, I’m not sure I’d
ever want to be accountable to anyone other than my publisher and my
conscience. (Shakespeare, 1997, p. 186.)
What ever the objection, the issue of authorial control, appears to be a red herring.
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Structural Change
The Union of the Physically Impaired Against Segregation (UPIAS, 1976) argued,
after Paul Hunt (1966) and Vic Finkelstein (1975), that disability should be seen as
‘caused by a contemporary social organisation’. In Britain, this has led to the call for
change in the way society is structured primarily in the area of rights and citizenship.
It has been powerfully employed as a banner under which disabled people and
others can unite to ght off their oppressors. Speci cally, in the research arena,
Barnes (1996) has employed this perspective as a basis from which to call on
academics to choose which side of the barricade they are on:
If disability research is about researching oppression, and I would argue
that it is, then researchers should not be professing ‘mythical indepen-
196 J. M. Davis
Whilst calling for, ‘the systematic demysti cation of structures and processes which create
disability’, Barnes (1992, p. 122) creates a discourse of them and us, oppressed and
oppressors. It cannot be denied that the physical, material and social organisation of
our society promotes inequalities, and withholds rights and resources to some
groups. Nor, can it be disputed that this should be an important topic for re-
searchers to investigate. However, this discourse talks of oppressed and oppressors
as if they are homogenous groupings. By creating ‘them’ and ‘us’ groups these
writers reduce the importance of people as social actors, reifying the role of structure
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and ignoring the diverse ways in which individuals and social groups relate to and
resist such structures.
Similarly, in anthropology, Geertz (1973) is criticised for only constructing a
single generalised version of Balinese culture. That is, he is accused of constructing
homogeneity where their may have been diversity (Crapanzano, 1986). Many
anthropologists, represent one voice (their own) or two (their own and the ‘voice’ of
the ‘other’ in their nal text (Clifford, 1986). The cultural diversity of a group/so-
ciety is ironed out as the anthropologist illustrates a single generalised version of
their ‘culture’ (Crapanzano, 1986). It has been argued that this process is interlinked
with the tendency of some anthropologist to claim an ‘I was there’, ‘This is how they
are’ authority for their writing (Asad, 1986).
rather the author points to different competing voices which con ict with his/her
own (Fisher, 1986). That is, the authority of the writer is dispersed, not by letting
others actually write the nal text, but by letting their variety of voices have equal
authority. Interestingly, this process may be complimented by research projects
which are carried out by a team of academics. Here, not only can ethnographic texts
include the different voices of respondents, but they may include, in the case of
multi-authored projects, the different voices of researchers (Corker & Davis, 1998).
The strength of this approach is that it can create the space through which a
variety of people empower themselves (readers and researched) by legitimising their
different everyday experience. Some in disability studies have written this type of
text from interview data:
We thought of our audience as a broad one: lay readers, academics,
professionals, but most of all disabled people. we hoped that disabled
people would recognise their own experiences and would feel vindicated by
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race, or medicalised notions of impairment. That is, where writers create homoge-
nous groups around these categories. This sort of research only represents the
common features of same age, gender, etc., people and neglects to account for
differences within these groups. [7] In doing so, it replicates the error of those who
argue that the social organisation of society creates two groups, oppressed and
oppressors, only in this case there are slightly more groups in each camp.
Two further criticisms are raised by Stone & Priestley (1996). First, that by
concentrating on difference, disability research may be con ned to the realms of
culturally relative story telling. Secondly, that notions of diversity may dilute the
political strength of the disabled peoples movement and eventually, obstruct the
improvement of disabled peoples lives. Therefore, within disability studies it appears
that counter hegemonic writing is in polar opposition to structural strategies for
change and that never the twain shall meet. However, a number of anthropologists
have tried to reconcile this con ict.
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certain behaviour and the relationship between this behaviour and the structures
within which it is embedded. He suggests that individuals tailor their behaviour to
speci c settings ( elds), that they possess uid identities which they draw upon to
guide their actions as they move through different social settings. An excellent
example of this type of text is Alan Campbell’s (1995) book, Getting to Know
Waiwai. In a beautifully written text, Campbell illustrates the everyday experiences
of Wayapi’ people of the Brazilian rainforest. He employs stories of everyday
interaction between groups and individuals to explore their reactions to changes in
their local environment, the in ux of incomers to their communities, and the
machinations of Brazilian governmental and global politics.
Whilst breaking down uniform concepts of culture this sort of text also unpicks
the concept of identity as a xed uniform entity. In anthropology Asad (1986) has
argued that we have different cultures within. In disability studies Corker points out:
‘disabled identity is embued with multiple and uid meanings which re ect and create
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context’ (Corker, 1999a, p. 195). In other elds, e.g. Queer theory, writers such as
Seidman (1998) resist the notion of unitary sexual identities by questioning ‘the
social forces that compel selves and social relations to be organised in sexual identity terms’
(Seidman, 1998, p. 185). The suggestion is that ethnographers should be investigat-
ing uniform notions of identity, culture and structure, and that this investigation
should enable the ethnographer to gain insight into how people respond to the
individuals, structures and cultures they encounter on a daily basis. Here, problems
of cultural relativism are overcome by synthesising notions of agency, culture and
structure.
This form of ethnography does not run the risk of weakening feelings of
collectivity amongst disabled people. It offers us the chance to illustrate different
peoples concepts of oppression and to gather a variety of de nitions of oppression.
By legitimising these different de nitions the ‘movement’ will increase in number.
This type of approach does not ‘assume that providing faithful accounts of individual
experience is enough’ (Oliver, 1999, p. 186). Rather, it complements Oliver’s (1999)
aim that research should go beyond notions of individual experience to understand
collective experience. However, at the same time it recognises Corker’s (1999 a–c,
p. 207) assertion, ‘that the collective itself must be tolerant of difference if it is not to
reproduce this hegemony’.
An important aspect of this approach is the study of people in positions of
power (Rabinow, 1986). That is, researchers can learn much from investigating
the social practices of those individuals and groups that disabled people encounter
on a daily basis (e.g. in the case of disabled children their family, neighbours,
other children and professionals in local government, health, social services and
education) because it is these people, and the groups and organisations they
associate with, who are most likely to inhibit the self-emancipation of disabled
people.
Multi-level post-structural approaches to research replace the polarisation be-
tween structural and experiential accounts of disabled peoples lives with complex
accounts of people’s lives. They also afford the ethnographer the possibility of
adopting a number of different roles post- eldwork.
200 J. M. Davis
between disabled people and their oppressors, or that the oppressors may have
aspects of their ‘selves’ which can be appealed to in order to facilitate change.
Hence, the rst sphere of in uence open to the researcher is the very locations
where they do research. The researcher by practising the non-authoritarian tech-
niques identi ed at the beginning of this paper, can set an example to the people
who he/she encounters in the eld, he/she can encourage process of dialogue. On
our recent project this meant setting an example to professionals of how they could
begin to start listening to the views of disabled children. [9] However, as has been
documented else where (Davis et al., 1999, 2000) this approach was not accepted by
everyone in the research setting, and at times I and my colleagues were put under
extreme pressure to change our practices. These experience, though uncomfortable,
were bene cial because they provide us with insights concerning the sort of re-
sources speci c adults could mobilise when attempting to control people or situa-
tions. This was an important learning process because it allowed us to gain an
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understanding of how these individuals would obstruct change. These insights led to
the conclusion that a part of our project should involve feeding back ideas of good
practice to policy makers and educators of professionals (e.g. teacher training
colleges). [10]
That is, the next sphere of in uence of the researcher involves contributing to
structural and cultural change by attempting to in uence the people who hold power
over professionals who work at the local level. Again, it is impossible to guarantee
that this information will be taken on board and mobilised in ways that actually
improve disabled children’s lives, as Shakespeare explains: [11 ]
Post-structural writers have identi ed what they call ‘the death of the
author’. By this is meant the openness of a text to multiple interpretations.
While the writers may have speci c ambitions and intentions, once the
book is in the public domain, others are free to read into it their own values
and feelings, and to use the arguments and evidence it provides to promote
ends which may be contrary to the authors intentions. There is no way
round this danger. For example, free market libertarians on the Right have
adopted the anti-institutional emphasis of the disability movement to argue
that day centres and other provisions should be closed down. A progressive
demand for autonomy and integration is converted into cuts in public
services and rolling back of the state. (Shakespeare, 1997, p. 178.)
The suggestion that the ethnographer cannot control how readers choose to inter-
pret their writing is a strong one, however, it maybe overly negative. Okely (1997)
points out that another consequences can be that an unintended group mobilises
your work in a positive fashion, in her case New Age Travellers. The dif culty of this
role is that there is a tendency for the researcher to be promoted to the position of
‘expert’ by policy makers and academic colleagues, and for researchers to be listened
to before or rather than disabled people.
The ethnographer ‘expert’ should only be considered to lie within his/her own
eld with his/her capacity to create the theoretical basis from which others actually
bring about change. These texts will reach an academic and possibly wider audience
202 J. M. Davis
and might also include acting as a policy adviser (Okely, 1997). Here, again, the
ethnographer is afforded expert status by policy makers, non-governmental organi-
sations and fellow academics. Again, this role can be problematic if the ethnographer
allows his/her own feelings of self importance to overshadow the fact that disabled
people are the ultimate experts on their own lives. This role is especially doubtful
where the researcher chooses to reinforce academic convention, rather than account
for data that is theoretically troublesome.
In our recent ‘Life as a Disabled Child’ project we have worked against the
majority of textual representations of disabled children’s lives. This has led us to
counter discourses which characterise disabled children as passive and vulnerable
(for an analysis of these discourses see Priestley, 1998; Shakespeare & Watson,
1999). We have demonstrated disabled children’s capacity as social agents and
illustrated the uid ways in which they negotiate their cultural and structural
experiences. In this role, ethnographers can write alone or with other members of
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their team to produce publications for a mostly academic audience. This role
involves the ethnographer staking their academic integrity on how other academics
respond to their work.
An alternative approach involves the ethnographer working with their respon-
dents. Here, the ethnographer exchanges their knowledge with disabled people in
the hope that it will contribute to their ght against oppression. This approach may
mean that the researcher becomes an activist in the foreground of a political struggle
(Okely, 1997) or that the researcher works in the background to support/advise
disabled people on where best to target their resources. Recently, this sort of role has
involved us working on a voluntary advisory basis with a group of disabled adults
and children at Access-ability Lothian. Here, our ndings have been employed to
support this organisations aim to improve disabled children’s experiences of main-
stream schooling. This organisation does not need a researcher to talk on its behalf,
rather it draws together the ideas of a variety of people as the basis from which to
support a group of disabled children in their aim to improve their own life conditions
through, amongst other approaches, peer education. Here, disabled children are
active agents capable of stimulating processes of change and the researcher and
other adults are helpful, but discrete allies.
The above roles are not mutually exclusive each is valuable in its own way. It
is up to the ethnographer to decide or justify which they choose to enact. Once this
choice has been made others, e.g. their respondents, can comment on how valuable
their contribution has been.
Conclusions
This paper draws on literature from within disability studies and anthropology to
argue that researchers, when investigating disabled peoples lives with the aim of
promoting social change, may bene t from:
· Being re exive in the eld about how their own perspectives in uence this
process.
Ethnographic Research and Text 203
· Explaining how power relationships are negotiated within the course of their
eldwork and what steps are taken to reduce the authority of the researcher
· Making obvious the process through which they choose to represent peoples
lives in text
· Illustrating the diverse and uid nature of the world they have investigated.
· Investigating the interplay of agency, culture and structure (material and
social) with in people’s daily lives.
It has been argued that ethnographers can make an important contribution to
disability studies by breaking down the ‘them and us’ characterisation of oppressors
and oppressed. That by unpacking homogenised views of culture and recognising
the uid nature of identity, ethnographers can help to stimulate the type of dialogue
and mutual recognition between disabled people and others called for by Corker
(1999a).
Crucial to this approach is the investigation of the relationship between individ-
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ual, cultural and structural issues. That is, social scientists may only be able to
contribute to the creation of the cultural and structural conditions within which
self-emancipation ourishes when they recognise that culture and structure are
embodied and expressed in everyday social practice.
A variety of theoretical perspectives have been employed as the basis from
which to examining how researchers can contribute to social change. Central to this
discussion has been the concept that respondents are the experts on their own lives
but that ethnographers possess expertise which can be utilised in a variety of ways
to contribute to processes of change. This expertise lies in their ability to produce
writing which counters hegemonic discourses and their capacity to represent the
complexity of peoples lives through recognising the importance of individual experi-
ence, culture and structure. By promoting a multi-level approach to disability
studies, this paper has argued that there are many ways for researchers to contribute
to processes of change and that these approaches are not necessarily mutually
exclusive.
Acknowledgements
I would like to thank Mairian Corker, Sarah Cunningham-Burley, Nick Watson and
the anonymous reviewers for their helpful comments on earlier drafts of this paper
NOTES
[1] For discussion of re exivity see Okely & Calloway (1992) Hertz (1997), Davis et al.,
(1999) and Corker & Davis (1998).
[2] This paper does not discuss the question of whether research with disabled people is better
carried out by researchers who have a medically de ned impaired, because the ideas and
suggestions made here would apply equally to impairment or non-impaired ethnographers.
However, the author recognises that academic cultures discriminate against certain groups
within society (including disabled researchers) and that unacceptable barriers prevent many
of the members of such groups from gaining the opportunity to become researchers within
the ‘academy’.
204 J. M. Davis
[3] See Davis (1998) and Davis et al. (1999a,b) for a discussion of this process in relation to
research with disabled children.
[4] See Zarb (1992; p. 136) for an outline of the positive aspects of this process.
[5] It should be noted that calling for researchers to have intellectual freedom is not the same
as stating their ideas cannot be questioned, or affected by those they study or others.
[6] Its should be noted that here the term ‘voices’ refers to verbal and non-verbal communi-
cation including sign and body language.
[7] See Davis (1998) for a discussion of this issue with regards to the ‘new sociology of
childhood’
[8] Though in this section I sometimes employ the collective ‘we’, it should be noted that the
ideas put forward here are my own perceptions and memories of our research experiences.
[9] Least this should sound too patronising, it should be understood that many of the adults
we encountered were already capable of doing this and many of the children would not
allow their views to be ignored.
[10] This has involved speaking at teacher training colleges and conference such as the ‘Special
Citizens’ conference held by Children in Scotland last year.
[11] See also in anthropology Clifford (1986).
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