Disability & Society, Vol. 15, N o. 1, 2000, pp.

63± 85

Researching Disability Politics, Or,

Som e Problem s with the Social
M odel in Practice
JILL C. HUM PHREY
Faculty of Applied Social Sciences, The Open U niversity, Milton K eynes MK 7 6AL, U K

A BSTR AC T This article arises from a research project involving the disabled mem bers’
group in UN ISO N, and problematises the social m odel which explicitly undergirds the
discourses and practices of this group. In abstract terms, there are dangers that the social
m odel can be interpreted in a way which privileges some im paired identities over others,
sanctions a separatist ghetto which cannot reach out to other groups of disabled and
disadvantaged people, and weaves a tangled web around researchers who adhere to the
em ancipatory paradigm . In concrete terms, these dangers are explored with reference to the
stories of im paired people who believe that they are excluded from the disabled mem bers’
group, the predicam ents of ex-disabled and differen tly-disabled people in relation to the
m ovement, and the culture of suspicion surrounding academ ics, particularly the `non-dis-
abled’ researcher as would-be ally. It is argued that, whilst such identities and issues might
appear to be `marginal’ ones in the sense of occurring at the boundary of disabled
comm unities, disability politics and disability studies, they should not be `marginalised’ by
disabled activists and academ ics, and indeed that they pose challenges to our collective
identities, social m ovements, theoretical m odels and research paradigm s which need to be
addressed.

Introduction

T he social m odel arose as a reaction again st the m edical model of disability, which
reduced disability to im pairm ent so that disability was located within the body or
m ind of the individ ual, whilst the power to de® ne, control and treat disabled people
was located within the m edical and param edical professions (O liver, 1996). Under
the bio-m edical re gim e, m aterial deprivatio n and politic al disenfranchisement con-
tinued unabated, whilst institutional discrim ination and social stigm atisation were
exacerbated by segregation (Barnes 1991). In this context, the social m odel harb ours
a num ber of virtues in rede® ning disability in term s of a disablin g enviro nment,
repositioning disabled people as citizens with righ ts, and recon® guring the responsi-
bilities for creating, sustaining and overcoming disablism . Indeed, when the social
m odel is confronted with the resurrection of the medical m odel in its bio-m edical,
psychological, psychiatric and sociological guises, then it needs to be vigoro usly

ISSN 0968-7599 (print)/ISSN 1360-0508 (online)/99/010063-23

Ó 1999 Taylor & Francis Ltd
64 J. C. H um phrey

defended (Shakespeare & W atson, 1997). However, this does not m ean that the
social m odel is ¯ awless, in either its design or its implem entation. M ore precisely, if
it is interpreted in a way which undermines the very comm unities, politics and
studies it was supposed to enhance, it is incumbent upon us to inquire `W hat’ s going
on? W hat’ s going wrong?’
A fruitful starting point and indeed one which already contains an answer to the
above questions, is to recognise that there are two main versions of the social model,
which are necessarily interrelated, but which will lead into opposing directions if we
are not careful.
In academic texts, the social m odel begins with an appreciation of the individual
and collective experiences of disabled people (e.g. Swain et al., 1993). It goes on to
elaborate the nature of a disablin g society in term s of the physical enviro nment, the
politic al econom y, the welfare state and sedim ented stereotypes (e.g. Barnes et al.,
19 99). Finally, it endorses a critical or em ancipatory paradigm of research (e.g.
Barnes & M ercer 1997a) . This analysis lends itself to a recognition of the array of
diverse experiences of disabling barrie rs; a realistic appraisal of the need for broader
politic al coalitio ns to com bat entrenched structural inequalitie s and cultural oppres-
sions; and an openness about the potential for non-disabled people to contribute to
critic al theory and research. In activist discourses, the em phasis is upon the fact that
it is non-disabled people who have engineered the physical environm ent, dominated
the political econom y, managed welfare services, controlled research agendas, recy-
cled pejorative labels and im ages, and translated these into eugenics policies. This
analysis lends itself to a dichotom y between non-disabled and disabled people which
becom es coterminous with the dichotomy between oppressors and oppressed; and
this tigh tens the boundaries around the disabled identity, the disabled people’ s
m ovem ent and disability research. W hilst this herm eneutic closure is designed to
ward off incursions and, therefore, oppressions from non-disabled people, it may
also have som e unfortunate consequences.
I would lik e to illu strate these consequences by draw ing upon a research project
involving the four self-organised groups (SOG s) for wom en, black people, disabled
m embers, and lesbian and gay m em bers in UN ISON (see Hum phrey, 199 8, 1999 ).
M aterial drawn directly from conversations and observatio ns in the disabled m em -
bers’ group is supplem ented by interview transcripts with mem bers of the lesbian
and gay group, my own personal experiences of and re¯ ections upon disability and
discrim ination, and recent developm ents in vario us social m ovem ents and critical
research texts. T he rest of the article depicts three problematic consequences of the
social m odel in practice and redirects them back to the social model as critical
questions which need to be addressed by its proponents. First, there are questions
of disability identity where a kind of `purism’ has been cultivated from the inside of
the disability com m unity. Here, it can be dem onstrated that som e people with
certain types of im pairm ents have not been welcomed into the disabled m em bers’
group in UN ISON , which means that the disability com m unity is not yet inclusive,
and that its m em bership has been skewed in a particular direction. Second, there are
questions of disability politic s where a kind of `separatism ’ has been instituted.
W hilst the UN ISO N constitution allo ws for separatism to be supplemented by both
 Researching Disability Politics 65

coalitio ns and transformations, these have been slow to materialise in practice, and
the dearth of such checks and balan ces in the wider disabled peoples’ movem ent
im plies that the danger of developing a speci® c kind of disability ghetto is m ore
acute. Third, there are questions of disability research where a kind of `provisional-
ism ’ is suspended over the role of researchers. The m ost obvious dilem m as
arise for the non-disabled researcher as would-be ally, but it is becoming clear
that disabled academ ics can also be placed in a dilem matic position, and it is
doubtful whether any researcher can practise their craft to their own standards
of excellence when operating under the provisos placed upon them by political
campaign ers.

Q uestions of Disability Identity

T he m edical model posited an essentialist conception of impairm ent, elaborated

com plex typologies of diagn oses and treatm ents, and erased the experiences of
disabled people from the m edical m ap. The social m odel sequesters im pairm ent
from disability and vests control of the latter in disabled people them selves. D is-
abled people are ipso facto in a privile ged ontological and epistem ological position in
relatio n to disability, insofar as they know when they encounter disablin g societal
barrie rs, and it is their experiential knowledges which should guide all debates on
why society is disablin g and how to erase disablism from the social m ap. The
proliferation of groups run by and for disabled peopleÐ in the service of practical
and social support, as well as cultural and politic al pursuitsÐ suggests that they are
rapid ly consolidating them selves into an ethnos. This is a term used by Anthias &
Y uval-D avis (1992) to denote a distinct people with a distinct culture, although this
should be understood in social constructionist, rather than essentialist termsÐ a
collectivity is not a pre-given essence, but rather only exists to the extent that its
m embers demarcate criteria of inclusion and exclusion as part of their re¯ exive
appropriatio n of their identity and heritage .
The boundaries of any given com munity are in this sense `arti® cial’ constructs,
and therefore contestable and changeable. The disability com m unity has already
m ade enormous efforts in recognising its own heterogeneity and in accom modating
to those with m ultiple identitiesÐ hence, the sub-groups for disabled black and/or
A sian people (e.g. Priestley, 1995) and those for disabled gay and/or lesbian people
(e.g. Shakespeare et al., 1996). This is a positive development in term s of under-
standing the multifaceted nature of identities and oppressions (see Vernon, 1999 ),
and the variega ted im pacts of policies and practices (see D rake, 1999).
It m ay become problematic if such sub-groups splinter apart from the main
m ovem ent(s) which gave birth to them , or if they prioritis e one aspect of their
identity or oppression above another, as indicated by Vernon (1999) . However,
there is another boundary problem which is arguably m ore germane to the disability
com m unity, since it pertains to the boundaries of disability itself. From the `inside’ ,
there are deaf people who are classi® ed as disabled in legislation and by society, but
who repudiate the disabled identity on the grounds that they constitute a distinct
linguistic and cultural m inority (e.g. Harris, 1995). There are also people who are
66 J. C. H um phrey

com ing to see them selves as disabled in spite of not being recognised as disabled in
of® cial or traditional discoursesÐ hence, the thought-provoking question from
Cooper (1997) `Can a fat wom an call herself disabled?’ T here is also a potentially
vast, but large ly untapped lim inal space inhabited by people who have journeyed
from a disabled to a non-disabled identity and sometim es back again , and by those
whose disabilities are hidden from the gaze of others (cf. French, 1993; D ruckett,
19 98).
The UN ISO N group is grounded upon the principle that anyone who self-
de® nes as disabled is disabled and is therefore eligible to join the disabled mem bers
group. In theory, this seem s to be a self-evident truism ; in practice, it m ay well
`work’ for many people; to artic ulate an alternative m axim would be inconceivab le
and, I would argue, undesirable. N evertheless, during the course of the research
project I was led, unexpectedly, to problem atise this m axim . First, it transpires that
there is an element of com pulsion in adopting a disabled identity, which m ay be one
aspect of what Shakespeare (1997) has dubbed the ` ª M aoismº in the M ovem ent’ .
M any members of the UN ISO N group refuse to accept the self-de® nitions of deaf
m embers as `deaf not disabled’ , insisting that they are deaf and disabled, or indeed
that they are ® rst and foremost disabled, and only secondarily deaf. M oreover, one
interviewee who worked in a voluntary agency run by and for disabled people
claim ed that their policy was to refer to all service-users as disabled people,
regard less of the fact that m any service-users repudiated this label. W hilst some did
not regard them selves as `disabled’ , others continued to use `inappropriate ’ termi-
nology to refer to their impairm ents, such as `handicapped’ , and here the social
m odel was deployed to over-ride self-de® nitions. The danger here is that the
politic al principles of m ore powerful disabled actors can be prioritised over the
personal perceptions of less powerful disabled actors until the principle of self-
de® nition lapses into self-contradiction:

DW [W ]e work with a lot of disabled people who are not interested in the
social model or anything like that. W hat we’ ve said is we won’ t use the
language they’ ve asked us to use about themÐ we’ ll just call them their
nam eÐ it’ s not that dif® cultÐ you don’ t have to refer to that language
necessarily, because you have to hold on to your principles as well.

Second, we can witness the silencin g of im pairm ents, as impairm ent is relegated to
a clandestine and privatise d space, an effect which H ughes & Paterson (19 97) have
attrib uted to the social m odel, and its dualism between im pairm ent and disability.
W hilst som e interview ees were explicit about their im pairm ents, these were people
with apparent im pairm ents in any event. O ne interlocutor enshrouded her im pair-
m ents in layers of secrecy so that after 2 hours of otherwise frank and detailed
dialogu es I was still bem used as to which im pairm ents she had experienced. W hilst
I was led to believe that different im pairm ents had im pacted differently upon her
career in workplaces, trade unions and civil rights politics, the discursive absence
around im pairm ents in their speci® city prevented m e from developing an accurate or
adequate understanding of her narrativ e:
 Researching Disability Politics 67

JCH: I ® nd it interesting that you had, like, an invisible im pairm ent that
became, kind of, visible Ð
DW : N o, that was a different thing.
JCH: O h, that was a different thingÐ righ t.
W : So then I was diagn osed as havin g something com pletely different. I’ ve
still got this other thing, but at the m om ent it’ s not so visible. (Em phases
added.)

A t the tim e, m y concerns that explicit interrogations could becom e oppressive

intrusions meant that I accepted the veil of ignorance and castigated m yself for m y
curiosity. Subsequently, I discovered that it was not just `outsiders’ who could be
perplexed by these `impairm ents with no nam e’ . A blind m an discussed his frus-
tratio n with other disability activists who challenged his inquirie s as to the nature of
their impairm entsÐ his standard reply was that it was an access issue not only for
him, in virtue of his blindness, but also for them , in virtue of his role as a
service-provider and access advisor. At the sam e time, this interview ee exhibited a
m ore general awareness that both disability politics and disability theory had been
dom inated by people with partic ular disability identities lik e his own:

DM : It’ s very convenient for people with apparent disabilitie s or impair-

ments to operate a social model which says. `W e don’ t want to discuss
things in term s of `im pairm ents’ . Because these people have got priority
anyway, and im pairm ent-related provision [in UN ISON ] ¼ The trouble
with it [the social m odel] is that it’ s very dif® cult ¼ for people with
learning dif® culties or other conditions ¼ which are not catered for ¼ to
raise their concerns as things which need dealing with on a service level,
without feeling that they’ re breaking the law and talking about im pairments.

T hird, the right to self-de® ne as disabled has as its logical corollary the duty to
accept others’ self-de® nitions, but suspicions that people are not who they claim to
be circulate around the disabled com munity in UN ISON . Casting aspersions upon
the purported disability of other group m em bers in veiled or outrigh t m anners, with
or without nam es attached, arose spontaneously during interview s. In m y naivete , I
neither com prehended nor challenged this at the tim e, but from re-reading and
de-coding interview transcripts, I can discern three themes as follow s: a self-de® ned
disabled person m ay be suspected of not being disabled when they harbour a
non-apparent im pairm ent, and/or express view s which diverge from the prevailing
consensus, and/or simultaneously belong to one of the other self-organised groups.
T hese them es, in turn, suggest the operatio n of hierarchies of im pairm ents, ortho-
doxies and oppressions, respectively. This is a strange juncture, where the propensity
to treat only tangible im pairm ents as evidence of a bona ® de disability identity clearly
m argin alises those with non-apparent im pairm ents, such as learning or mental
health ones, whilst the reluctance or refusal to differentiate between im pairm ents by
identifying them bolsters up the claim s by people with apparent im pairm ents that
they represent all disabled people. The twist in the tale is that when other disabled
people do become visible and audible in interrogatin g the hierarchy of im pairm ents,
68 J. C. H um phrey

they may ® nd them selves once again m argin alised as the other hierarchies of
orthodoxies and oppressions come into play. For one thing, people with learning or
m ental health dif® culties m ay speak with a different voice, given the qualitativ ely
different stigmata attached to different impairm ents and give n the fact that the social
m odel has been developed by those with physical impairm ents, so that their
contrib utions may be interpreted as deviatin g from prevailing orthodoxies. For
another, people who belong to another oppressed group m ay be all too visible in
their difference, but their blackness or gayness may be construed as detracting from
their contributions as disability activists, give n the propensities of each group to
prioritise its own speci® c identi® cation-discrim ination nexus. T he follow ing intervie-
wee testi® es to som e of these dynamics:

DM : People have the right to self-de® ne. But what we’ ve never said is who
has got the right to challenge. So if som ebody says `I’ m a disabled person;
I’ ve come to this disability group’ I don’ t know how you can deal with your
suspicion that they’ re not. In fact you can’ t deal with it. A nd you have to ask
yourself why you want to deal with it ¼ [nam es m entioned] ¼ But I’ m
absolutely convinced that there are lots of people who don’ t com e to groups
because they’ re frigh tened that they don’ t look disabled enough.

Indeed, this hierarch y of im pairm ents and this `policing’ of the disability identity
does act to exclude UN ISON mem bers who believe that they experience the
disabling effects of an im pairm ent, but who suspect that they would not `count’ as
disabled people according to the prevailin g criteria in the disabled members’ group.
Evidence for this em erged during a detailed case-study of the lesbian and gay group,
and two examples should suf® ce. The ® rst exam ple is of a lesbian who had been
dyslexic since childhood, who had experienced a range of discrim inations in edu-
cation, employm ent and everyday life, and who was registered as disabled with the
D epartm ent of Em ployment. She sought to engage in her local disabled m em bers’
group, but disengaged after the ® rst m eeting:

DL: I’ m also disabled with an invisible disability, dyslexia ¼ I have to

educate people about dyslexia as well ¼ A n invisib le disability is very
dif® cult for people to cope withÐ you have to tell each new person, and
then they each interpret it differently, and then they can forget ¼ A nd it’ s
a ¯ uid disability as wellÐ it’ s manageab le sometim es and unmanageab le
other tim es ¼ and people can’ t deal with that either ¼ ’
JCH: D id you ever go to the disabled m em bers’ group?
DL: I did. A nd I got stared at when I walked in. By people who really
should know better.
JCH: Sorry. W hy did you get stared at? This is not obvious to m e!
DL: Because I didn’ t look like I was disabled.

T he second exam ple is, perhaps paradoxically, som eone whose im pairm ent was
visib le, but who dared not join the disabled mem bers’ group on the grounds that it
was not `severe’ enough to be taken seriously by other group m em bers. The
im pairm ent in question was skin allergie s over her entire body, including facial
 Researching Disability Politics 69

dis® gurem ent which is recognised under the Disability D iscrim ination Act 1995, as
one of its few token gestures towards the social model of disability (Equal O pportu-
nities R eview, 1996). N evertheless, this interviewee’ s self-de® nition as disabled was
confounded and then crushed by her convictions that disability activists would
de® ne her as non-disabled:

DL: `I get quite bitter sometim es. I don’ t think I’ m disabled, because I
don’ t think that what I’ ve got prevents me from functioning, or society
doesn’ t prevent m e from functioning. But it probably does ¼ A nd m y skin
tissue scars very easily, and I’ ve got visible marks on my face, and people
do look, and I do feel conscious of it, and I’ m made to feel conscious of it.
But I would feel like I wasÐ what’ s the word?Ð an impostor if I attended a
disability caucus for those reasons. I feel that the disability caucus excludes
people like that ¼ N obody takes things lik e that into account.
JCH: The crazy thing is, that until people like you get involved in the
disability m ovem ent in the union, then they won’ t take things like that into
account! But that does put a big burden on youÐ or on people in your
positionÐ to come out and say `Hey! W e’ re here too! W hat about us?’
DL: But I feel lik e m ine is a m inim al com plication. Or whether I’ m m ade
to feel that way ¼ ?

T he argument here is that the social m odel as operationalised within the U NISON
group has both rei® ed the disability identity and reduced it to particular kinds of
im pairm entsÐ physical, im m utable, tangible and `severe’ onesÐ in a way which can
deter many people from adopting a disabled identity and participating in a disability
com m unity. W hilst this indicates that the social model may harbour its own set of
indigenous essentialism s and exclusions, the solution is not to capitulate to the
other-im posed essentialis ms and exclusions of the m edical m odel, but rather to work
towards a more inclusive m odel. T his will entail a more welcom ing stance towards
all those who self-de® ne as disabled whatever their im pairm ent m igh t be and
towards those who experience impairm ents and who want to combat discrim ina-
tions, but who do not choose to identify as `disabled’ for whatever reason. It is tim e
for people to ask `W hat do we m ean by ª ourº comm unity? Are its building-blocks
safe or its boundaries sensible?’ There m ay be m erit in re¯ ecting upon Y oung’ s
(1990a ) warning that comm unities are often fabricated out of the yearning to be
am ong similar-an d-sym metrical selves, to the point where m em bers respond to
alterity by expellin g it beyond their border. Clearly, a self-perpetuating spiral can be
set in m otion, whereby the tighter the boundaries are draw n, the m ore those
included will norm alise their sameness and exclude others, the more the excluded
will become estranged others, and the less the com m unity will be informed by
experiences of and re¯ ection upon diversity, etc. T his should not be misreadÐ the
U NISON group, like m any other disabled people’ s organisations, is at least as
democratic as any other social or political group in its constitution, and it is at least
as diverse as any other in respecting multiple identities. Paradoxically, som e disabled
people’ s organisations may have expended m ore energies in reaching out to black
and gay people who harbour speci® c impairm ents than in reaching out to differently
70 J. C. H um phrey

disabled people whatever their other oppressions. Of course, we must do both. But
the question `W ho is to ª countº as a m em ber of the disability com m unity?’ is not
as strange as it m ay sound and m ay even be the Achille s heel of disability politics to
date.

Q uestions of Disability Politics

T he social m odel germ inated from within the wom b of the disability movem ent, and
has been the source of the m ovem ent’ s consolidation and legitim ation. If the m odel
is predicated upon the disablin g effects of society, then the movem ent is predicated
upon the self-organisation of disabled people in combating this disablin g society;
since society has been arran ged by and for non-disabled people, they are liab le to be
consigned to the enem y cam p. W hilst such an over-sim pli® ed schem a has been
stam ped upon the psyches of activists, rather than the texts of academ ics, it does
create tensions in the writin gs of some academ ic-activists. N o doubt some follow
T om Shakespeare’ s (1993, 1996a) valiant attempts to bury the disabled/non-dis-
abled and oppressed/oppressor dualisms by reminding us of the m ulti-faceted
oppression matrix. N o doubt others follow Fran Bran® eld’ s (1998, 1999) attem pts
to resurrect such dualism s for the sake of separatism, which co-exists uneasily with
an acknowledgem ent of complexity. Initially, she places non-disabled people in the
role of oppressorsÐ `[T]heir experience, their history, their culture is our oppression
¼ O ur oppression is their responsibility’ (Bran® eld, 1998, p. 144). A s such they
m ust be outsidersÐ ` ª Non-disabledº people are not where we are and can never be.
T his is the politic al impossibility of their relatio n to the disability m ovement’
(Bran® eld, 1998, p. 143). Even if they are supporters, this support must not
overspill into involvem ent and will not suf® ce to allay suspicionsÐ `[F]or non
disabled people, the recognition of disablism and the will to ® ght it, does not exem pt
them from participating in and perpetuating disablist practices’ (Bran® eld, 1999 , p.
40 0). T heir role as `allies ’ is m etaphorically bracketed by the use of quotation m arks.
Non-disabled people who adhere to the tenets of the m odel and the movem ent
roam around in a kind of `N o (W o) M an’ s Land’ , and insert an aporetic space into
disability theory. D rake (1997) has usefully form ulated som e rules of engagem ent
ranging from positive injunctions to supply resources to disabled peoples’ groups as
and when requested, and without strings attached to negative prohibitio ns again st
speaking on behalf of disabled people and coveting positions of power in the
m ovem ent. N evertheless, this does not resolve vario us personal, practical and
politic al problems. First, the dualism between disabled and non-disabled people
rem ains intact in a way which can m ilitate again st a recognition that m any currently
non-disabled people have been and/or will becom e disabled in their lifetim es, that
m any carers and som e professional service-providers are also disabled people, and
that the disability identity may have been constructed in a way which lim its its
inclusiveness. Second, there is no practical-politic al space that encourage s support-
ers to organis e them selves so that disabled people can call upon them if required for
m ass protests. For exam ple, the wom en’ s m ovement has spaw ned pro-feminist
m en’ s m ovements which work towards the transformation of m en, as well as
 Researching Disability Politics 71

m arching in support of wom en’ s rights (see M essner, 1997), and the lesbian and gay
m ovem ent has spaw ned organisations of `parents and friends of lesbians and gays’
in the U S, which carry gay-af® rmative messages into the heterosexual society (see
G rif® n et al., 198 6). Third, there is no theoretical-political space in which to
differentiate actual and potential enem ies and allies. For example, in gender studies
we are now familiar with distinctions between powerful and subordinated m en,
hegemonic and despised m asculinities, outrigh t misogynists and quasi-reconstructed
m en, potential allies and actual pro-fem inist cam paign ers, etc. (cf. Segal, 1990;
Broad & Kaufmann, 1994).
Self-organisation in U NISO N represents an attem pt to articulate the three
m oments of separatism , coalitio n and transform ation in a way which m axim ises the
bene® ts of separatis m by linking disabled people in a critical m anner back to the
world beyond the ghetto. The m om ent of separatis m is preserved within each
self-organised group, so that, for example, only those who self-de® ne as disabled are
eligible to participate in the disabled members’ group, where the disability agenda is
created by democratically constituted conferences and comm ittees. However, the
constitution inoculates each SO G again st a fully-¯ edged separatism . The m oment of
coalitio n opens up the prospect of joint cam paign ing with other self-organising
groups on issues which cross-cut identity. The m oment of transformation opens up
the prospect of changing the policies and practices of the m ainstream union, and
challenges non-disabled unionists to re¯ ect critically upon their own identities and
histories, so that equality agendas can be transported into all their bargain ing
activities . W hilst the activation of the links between these m om ents is far from
perfectÐ the politic s of self-organisation from m inority groups may itself create
barrie rs to a politics of coalitio n and the politic s of prejudice in m ajority groups may
resist a politics of transformationÐ the im portance of holding together these three
m oments within the constitution of the progressive polity should be underscored.
Self-organised activists in UN ISON have been able to appreciate the oppres-
sions of `other Others’ and to acknowledge the potential role of `vario us others’ as
allies, whilst still retaining control over their own politics, as indicated in the
following extrac t:

DW : I could not work with ¼ non-disabled people around very speci® c

issues about being a disabled person and m y oppression, because they’ re
disablist, and they cannot possibly understand what it’ s like to be a
disabled person ¼ D oes that m ake sense?
JCH: It does and it doesn’ t. I m ean, the fact, say, that I would identify as
a non-disabled person, does that m ake me intrinsically disablist? And does
that prevent a coalitio n, or at least an understanding? ¼
DW : R igh t. Okay. YesÐ m y position would be that you are intrinsically
disablist, because you are a non-disabled person. Just as m y position would
be that I am racist because I’ m a white person. But it would not be
acceptable if I just accepted that. I see it as m y responsibility to learn all m y
life about why I’ m racist and how I can minim ise the effect I have on black
people of my racism . A nd I can do that by going on training courses; I can
72 J. C. H um phrey

do that by reading; by ensuring that black people are included in all the
things I do or set up or organise; I can do that by constantly thinking about
my behaviour and attitudes and the way I approach thingsÐ whether I’ m
being, say, too nice to black people because of white guilt, or I’ m excluding
people or not being aware of the fact that they’ re excluded ¼ But I’ ll never
not be racist because I’ ll never know what it’ s like to be a black person ¼
So my argument is the sam e for disablism . But I don’ t think that should
lead to guilt, which m eans that non-disabled people do nothing about it.
And I don’ t think it m eans that they can’ t be allies of the D isabled People’ s
M ovem ent ¼ As long as those non-disabled people accept that it’ s got to
be under disabled peoples’ control.

O n a prima facie reading, this contains a valid argument and analogy. However, I
have had to ponder long and hard on why I felt uncomfortable with this dialogu e at
the tim e, and with this transcribed text afterwards. I can offer two very different
accountsÐ one `academ ic’ and the other `autobiograph ical’ Ð and I shall leave the
reader to adjudicate upon their relative importance and in¯ uence.
The academic account revolves around interrogatin g some of the theoretical
assumptions which undergird disability politics. Firstly, the politic s of experience
which states that a live d experience of a give n oppression is a necessary if not
suf® cient prerequisite for understanding that oppression and becom ing part of the
solution rather than part of the problem , is not entirely tenable. It cannot be pursued
too far without lapsing into self-contradictionÐ taken literally, it entails that those
with spinal cord injuries cannot understand those with visual im pairm ents and so
on, leavin g each group in isolation and deprive d of the chance to elaborate a m ore
inclusive civil righ ts agenda or a m ore overarching theory of disability. This is
increasingly being recognised by fem inists (e.g. M ohanty, 1992) and disabled writers
(e.g. Barnes, 1992). Secondly, the politics of education could be steered towards a
m ore fruitful conclusionÐ the question is whether it is true and/or helpful to call
som eone `disablist’ or `racist’ if they have assum ed responsibilities in bringing about
a non-disabling or non-racist society by re-educating themselves and others, and by
alterin g their social practices and institutional policies, and if they are indeed doing
this on a daily basis and over a lifetim e’ s lab our?
Thirdly, the politic s of power must surely in¯ ect our analyses of the disabling
society, our attribu tions of responsibility and our expectations of results. Ironically,
it m ay be those labouring under other oppressions who are m ore `in tune’ with the
disability movem ent than those who comm and power and resources, suggesting that
som e diatribe s again st non-disabled would-be allie s m ay be misdirected (see Scott,
19 94). Indeed, recent works indicate that questions of class are being tackled in
relatio n to both disabled and non-disabled people (e.g. Barnes et al., 199 9; Drake,
19 99; Vernon, 1999). Fourthly, the politic s of history needs to be inserted into the
equation and here we could borrow from Bhaskar’ s critical realism . In essence, this
concerns the ontological asymm etry between society and individuals, and the
historical priority of society over its contemporary inhabitan ts. In practice, it means
that the institutional edi® ce and cultural soil of any give n society has a m uch longer
 Researching Disability Politics 73

history than anyone born into that society and that it will outweigh the efforts of
any given group to change that societyÐ in many cases, this will be alm ost `irre-
spective’ of their position (see Collier, 1994). If we want radical change in the
here-and-now, the only known route is that of the bloody revolution which secures
a historical hiatus at an extortionate price; if we want non-violent changes which
endure over the generations the only known route is extensive consciousness-rais-
ing and cam paign ing (see Fay, 1987). Either way, m ass m obilisation is requiredÐ
either for the top-down seizure of the power apparatus or the bottom -up
m etam orphosis of all peopleÐ so that any give n oppressed group would be ill-ad -
vised to repudiate allies or allian ces.
The autobiograp hical account revolves around personal disclosures and links
up to the debate about different kinds of disability identity, as well as raising som e
neglected questions about the temporality and transparency of identities. To nam e
m yself as a non-disabled person, to experience an inexplicable af® nity with dis-
abled people and to be caught up in the web of disablism was extrem ely perplexing
and painful for m e. M y adolescence was charac terised by episodes of sexual abuse
(extra-fam ilial), resulting in a psychosom atic disorder (anorexia nervosa) and
m edical intervention (initially resisted, but life-saving). Each `recovery’ on my part
attracted m ore abuse from other m en and induced a `repetition’ of the disorder,
occasioning psychiatric intervention (eventually requested, but soul-destroying).
A fter inoculatin g myself with the assistance of education, counselling, political
activism and lesbianism , I became a social worker specialisin g in sexual abuse and
a volunteer facilitatin g self-help groups for women survivo rs.
There are at least four questions that can be highlig hted at this juncture.
Firstly, there is the transparency of identity. I had identi® ed as a survivo r of sexual
abuse and as an ex-anorexic, but not as a survivor of psychiatry or as an ex-dis-
abled person, and I was only induced to m ake these links by an ex-lecturer of m ine
who considered m y interest in disability to be perfectly transparent when I con-
sulted him towards the end of the project, when it still remained obscure to m e.
Secondly, there is the tem porality of identity. In m y case these are experiences of
20 years ago and are unlikely to recur, although they are inscribed upon m y body
and psyche, and have in¯ uenced m y personal, politic al and professional itineraries.
H owever, even if I were entitled to nam e myself an `ex-disabled person’ , there
seems to be no obvious home for ex-disabled people in the disabled people’ s
m ovem ent. Thirdly, there is the speci® cs of disability identity. It seem s to m e that
m any experiences of the disablin g society do not spring directly from physical
im pairm ents, and that the society/identity relatio nship m ay be reversible in cases of
psycho-som atic and psycho-social impairm entsÐ here, it is often the disabling/
discrim inating society which produces `disorders’ as perverse implants. Fourthly,
there is the politics of claim ing a disability identity. Activists who are con® dent
about their insider status are not alw ays sensitive to those who are unsure of their
identity or who inhabit a lim inal position, which delays, disrupts or distorts the
com ing-out process. In addition, com ing out under duress attracts further
suspicion, as illustrated by the case of a prom inent ® gure in the TUC’ s D isability
Forum , who had been subjected to serious criticis m for being a non-disabled
74 J. C. H um phrey

person, but who later explain ed that he was actually in the process of com ing to
terms with depression:

DM : M y response to that was twofold. On the one hand, I thought: `Isn’ t

it great that som ebody has com e out of the closet and said that?’ The other
half of m e thought: `W ell, that’ s bloody convenientÐ here’ s a guy getting
¯ ack from disabled people over the representation of disabled people in the
Forum , and all of a sudden he ® nds a disability.’ Now, both those things are
true ¼ But what can I say anyway? If he says that, what can I say? Except:
`W elcome’

M y attem pts to m ake sense of all this have led m e to note the follow ing points. In
terms of the UN ISON group, I was informed by one of its leaders that the group
would consider itself able and willin g to deal with im pairm ents across the spectrum,
but that the actual absence of people with learning and mental health dif® culties
m eant that in these cases there was representation, rather than presence, and
advocacy rather than self-advocacy. In terms of legislation, the D isability D iscrimi-
nation Act 199 5 does include `clinically recognised m ental illn ess’ , as well as
protections for those who have experienced physical or m ental im pairm ents in the
past, alth ough this should not be m isread as an endorsement of the Act in general,
given its roots in medical and psychiatric discourses (Equal O pportunities Review,
19 96). In term s of texts, wide-ranging accounts of disability seem to have been
written with only passing references to those with `m ental health’ problem s (e.g.
Cam pbell & Olive r, 1996; Barnes et al., 1999; Drake, 1999), although there are
several articles on learning dif® culties both in Disability & Society and in other edited
collections (e.g. Swain et al., 1993). Likewise, the history of the British M ental
H ealth Users’ M ovement, along with critiq ues of psychiatry and policy, have been
explored with m inim al references to `disability’ (e.g. R ogers & Pilgrim 1991, 1995 ).
T he prospects for a rapprochement can perhaps be discerned in the notion of a
`cross-disability movem ent’ m entioned by Caras (1994) in relatio n to the Am erican
with Disabilitie s Act; the endeavour of two UK academ ics to work together across
different disability groups (Beresford & Cam pbell 1994); and a seminal article by
Beresford & W allc raft (1997) tracing out sim ilarities and differences in experience,
strategy and philo sophy. Nevertheless, the general picture has been that of two
parallel life-worlds and politic al m ovem ents, and there m ay be many people who are
literally left not knowing where or whether they belong, as well as m any untapped
possibilities for coalitio n.
Beyond this, I would want to suggest that there are three possible routes
through disability politics, depending upon whether we priorities identities, issues or
ideologies, and that each path has its virtues and vices depending upon how we
travel along it. Firstly, the `identity’ route is the solitary path of separatis m, which
speci® es that only disabled people can m ake the journey. This guarantees that the
m ovem ent is led by disabled people and that it will not be hijacked by any other
people; it m ay entrain other problem s, since a pure identity-based m ovem ent will
have to include disabled people regard less of whether they adhere to the social
m odel or are interested in other oppressions, and it runs the risk of becoming
 Researching Disability Politics 75

isolated. Secondly, the `issues’ route im plies a network of intersecting paths insofar
as people from variou s groups and m ovements join forces in combating shared
discrim inations. Coalitio ns `make sense’ insofar as a varie ty of people suffer prob-
lems with poverty, housing, transport, education, employm ent, health services and
m edia representation, etc., and insofar as the pooling of resources can only enhance
consciousness-raising and campaign ing; but it m akes for m ore com plex policies and
strategies, and the `working together’ process is m uch easier to describe than to do.
T hirdly, the `ideology’ route is when we em bark upon a politic al journey only with
those who share our critiqu es of the status quo and our visions of a better world,
regard less of whether they share our particular identities or even our particular
issues. T his m ight m ean that those who take the journey with us do not suffer direct
oppression as suchÐ they m igh t be critical theorists or radical psychiatrists or
m ainstream trade unionistsÐ alth ough they will, nevertheless, experience the world
we all inhabit as oppressive on account of their observatio ns and convictions. In
other words, the politics of experience may need to be re-workedÐ our `experience’
is rather more com plicated than it looks, and our `politics’ needs to become rather
m ore complicated than it is.

Q uestions of Disability R esearch

T he social m odel also underpins disability researchÐ m ore precisely, without dis-
abled activists and academics there would be no social m odel and no disability
studies. M ike Oliver (1992) explained how traditional research paradigm s had
bene® ted the researchers m ore than the researched, and that such research was
viewed by disabled people `as a violatio n of their experience, as irrelevant to their
needs and as failin g to im prove their m aterial circumstances or quality of life’ (p.
10 5). W hilst disability research is prim arily undertaken by and for disabled people,
there is an invitatio n to non-disabled researchers, at least from academ ic-activists
like M ike O live r, Colin Barnes and Tom Shakespeare, to contrib ute to the process
of em powering disabled people and educating non-disabled publics. N evertheless,
this is hedged with some am biguity, as captured in the work of Colin Barnes. On the
one hand, `logic dictates that if a researcher is to empathise with those being
researched then it follows that their life history m ust be as near as possible to that
of the people being studied ¼ ’ (1992, p. 117). On the other hand, `I am not
convinced that it is necessary to have an im pairm ent in order to produce good
qualitativ e research within the emancipatory m odel ¼ ’ (1992 , p. 121). W hilst
`academics and researchers can only be with the oppressors or with the oppressed’
(1996a , p. 110), it is unclear how to differentiate between them Ð `For som e
[non-disabled researchers], their lack of personal experience of disabling barriers
m eans that their contribution lacks authenticity; for others, disabled and non-dis-
abled researchers live in a disablist society and both can contrib ute to disability
theory and research’ (Barnes & M ercer 1997b, p. 6). This is probably true, but it
still leaves the non-disabled researcher in lim bo, suspended above both ally and
enem y cam ps, clutching at best a temporary visa.
During m y own research project, I becam e acutely aware of this am biguity,
76 J. C. H um phrey

which was no doubt exacerbated by an emergin g angst around the discrepancy

between m y `non-disabled’ public persona and m y `ex-disabled(?)’ inner identity. At
one extrem e, I was welcom ed to the point of being treated and even named as an
`honorary disabled m em ber’ . There were several researchers and an entire research
team studying self-organisation in UN ISO N, but I was the only person to approach
the disabled m em bers’ group for documents and discussions, and m y overtures to
the N ational Disabled M embers’ Of® cer were perceived as a way of rescuing the
group from oblivion . In addition, I was already a self-organised activist and had been
involved in workshops involvin g all four SOGs over several years, and my explicit
com m itm ent to adopting a self-organised standpoint and advocating coalition poli-
tics furnished stepping-stones into the groups of which I was not directly a m em ber.
O f course, I rapidly developed a sense of af® nity with disability politic s during the
course of interviewing a few key activistsÐ to the point where I had to rem ind m yself
of my research role as observer not participant and curb m y descent into `we-speak’
on a regular basis.
At the other extrem e, I was cast as the outsider-cum -oppressor to the point of
a com plain t about my attendance at the 19 97 National Disabled M em bers’ Confer-
ence. W hen the N ational D isabled M em bers’ Of® cer invited me to this weekend
event, m y agreement was given on the condition that consent from disabled
m embers, or at least the N ational Disabled M embers’ Com m ittee (ND M C) as their
representative leadership body, should be forthcom ing for m utual protection. How-
ever, after a day’ s journey to Conference, m y ® rst encounter proved disastrousÐ
when I approached a m em ber of the N D M C asking for directions to registration, I
was asked if I was a new disabled delegate, and when I explain ed my actual status
I was inform ed that m y presence had not been cleared through the N DM C and that
it would be m ade subject to an im mediate com plain t which could result in im minent
expulsion. In response, I obtained m y keys, retreated into m y room, left m essages for
the National D isabled M em bers Of® cer and lived through an explosive concat-
enation of emotions, ideas and images. The criticism s I harboured towards m yself
and others for failin g to clarify and ratify m y role were innocuous compared to the
good conscience/bad conscience struggle , between m y horror that I could be
(construed as) destroying this sanctuary for disabled m em bers and m y outrage that
m y bona ® de credentials as an activist and an academ ic counted for nothing. It was
not until the next morning that I ventured outside to await m y fate. It was som ething
of an anti-clim ax to discover that the question over m y attendance had not really
been resolvedÐ casual com ments were m ade to the effect that m y ® rst encounter
was with a delegate whose views were not necessarily representative of the ND M C,
that the co-Chairs had concurred that, after such a long journey, it was unwise to
send me home again and that I could sit at the back of the Conference Hall in an
unobtrusive manner for the main debates.
W hilst I did m eet old friends and m ake new ones during this weekend, I needed
to make sense of the earlier ® asco and ensuing conversations with disabled people
have led me to crystallise the objections to the non-disabled researcher into two
claim s; that `you have no righ t to undertake disability research’ and `you are not able
to represent disabled people’ , which I shall pursue further. In terms of `rights to
 Researching Disability Politics 77

undertake research’ , there are som e disability activists who seem to believe that the
righ ts of disabled people to do disability research are integral to their citizenship, and
even that the duty of non-disabled people is to refrain from such research. Caution
needs to be exercised here, not only because citizenship can only supply negative
righ ts not to partic ipate in or be exploited by any given research project, but also
because there are distinct qualitie s and quali® cations at stake in becom ing a disabled
person and becom ing a researcher, and indeed in becom ing a disability activist and
becom ing an academ ic. Arguably, the ideal scenario would be to com bine these
qualities and quali® cations, and to work together across different kinds of dis/abili-
ties so that both professional codes of ethics and political codes of empowerm ent can
be respected (cf. B Á arnes, 1996a; Bury, 1996).
Yet the non-disabled researcher appears as a Janus-faced creature com ing from
one life-world and becom ing part of another: Is s/he a partisan or parasite, partner
or oppressor, partic ipant or voyeur etc.? Indeed, the non-disabled researcher may
have to becom e a Janus-faced creature in another sense, attuned to the different
prioritie s of different audiences. On the one hand, many disabled people, perhap s
especially at the grassroots, prioritise the sharin g of an im paired identity. Their
concerns about a non-disabled researcher are unlikely to be allevia ted by other kinds
of information. In m y own case, I had worked with learning disabled children and
adults, counselled disabled survivo rs of sexual abuse and live d with a hearing
im paire d partner over several years, but was acutely aware that the roles of carer/
counsellor/partner could be subject to critiqu e, so that, yet again , I retreated into
silence. It is heartening to note the growing endorsement of regular interactions
between differently disabled and non-disabled people as a way of transcending the
speci® cs of identity (cf. Barnes, 1992; Priestley, 1995).
On the other hand, m any disabled people, perhaps especially am ong academ ic
and activist leaderships, prioritise the sharing of the em ancipatory paradigm . Non-
disabled researchers will be adm itted on certain provisos which can be sim pli® ed
and summ arised as follows. First, the `equality’ proviso is about involving disabled
people throughout the research process until the ideal of equality is realised as
closely as possible, so that everyone becom es a co-researcher and a co-subject (cf.
R eason, 1994; Beresford, 1996); it is som etim es extended to `reversibility’ , whereby
the hierarchical social relationships of research production are supposed to be
reversed (Stone & Priestley 1996). Secondly, the `accountability ’ proviso is about
being accountable to disabled participants in term s of methods, processes and
results; but it is also typically extended to em brace giving an account which adheres
to the prevailing model in disability studies (cf. Olive r, 1992; Beresford, 1996; Stone
& Priestley, 199 6). Thirdly, the `autonomy’ proviso is the assertion of the ultim ate
priority and autonom y of disabled peopleÐ `[R]esearchers have to learn how to put
their knowledge and skills at the disposal of their research subjects, for them to use
in whatever way they choose’ (O live r, 1992, p. 111)Ð and this is som etim es depicted
as a `reverse com modi® cation’ (Stone & Priestley, 1996).
These provisos comm and consensus to a point and then disintegrate into
controversies. Equality is only m eaningful at the level of our shared humanity, or if
we are researching people whose histories and current positions are very closely
78 J. C. H um phrey

related to our own, but most research relatio nships are im bued with sets of
differences. It is perhaps by respecting differences in experience, roles, insights and
skills that the m ost valuable form of equality can be engendered (see Glucksmann,
19 94), but this is a far cry from `reversibility’ , which m ay, indeed, usher in an
abdication of the researcher’ s responsibility as a researcher (see Stone, 1997 ).
A ccountability is necessary in term s of establishing a dem ocratic partnership across
our differences so that a dialogue with m utual feedback is sustained. It is often
im possible to provide `results’ beyond a report, insofar as concrete services to those
who disclose poverty or violence are not within the researcher’ s control (see Kelly et
al., 19 94); and to assum e that researchers are equipped to deal with such disclosures
even in situ is unwise (see Shakespeare, 199 7). It is also folly to pre-determ ine the
theoretical m odel of any research report, as Em m a Stone (1997) discovered in her
research in China, where the social m odel was not only incongruent with the
world-views of disabled people, but also vulnerable to the charge of im porting
W estern im perialism . Autonom y is to be cherished on all sides, but disabled people
and researchers will need different kinds of autonom y for different purposes. An
uneasy asymm etry surfaces here, since disabled people have more negative freedom
at the outset of the project in deciding whether or not to participate at all, whilst
researchers enjoy m ore positive freedom at the end of the project in their report-
writin g. There are ways of m inim ising this asymm etry, especially during the project
itself, but it cannot be eradicated, if only because it is the researcher who `owns’ or
`controls’ the data in the ® nal analysis, and the deployment and dissem ination of this
data is integral to the researcher’ s responsibility. To entertain a `reverse com -
m odi® cation’ here could even be harm ful, as perhaps illu strated by M ark Priestley’ s
(1997) decision to devolve control to the D erbyshire Coalition of D isabled People.
T he m erits of the project are not in question, but relinquishing independence has a
double-sided price-tagÐ on one side, there were refusals to co-operate with a
`non-independent’ researcher from the Social Services D epartm ent; on the other
side, there were certain constraints upon empirical and theoretical work from the
Coalition . In this situation, one would expect to ® nd a report which is avidly
digested by grassroots activists, but virtually disregarded by policy-makers. In other
words, if the lim ited in¯ uence of researchers hinges upon their `perceived’ indepen-
dence, then we are unlikely to circumvent this with a `pretend’ independence. O n a
personal note, if I had signed up to the agenda of some leaders in the U NISON
lesbian and gay group at an early stage of m y own project, I would never have
conducted any research with disabled m em bers (or anyone else).
The second claim pertains to `the representation of others’ . There can be no
doubt that disabled people have `rights’ to represent themselves and even a duty to
`take’ such righ ts when not otherw ise forthcom ing, since they have been and still are
grossly m is-represented by non-disabled people (e.g. M orris, 19 91; Barnes, 1996b ).
T here can also be no doubt that self-organised groups of disabled people and
service-users are repeatedly m argin alised in all kinds of research projects, resource
allo cations and representational forum s, so that they would need to enjoy priority
status over traditional charities, universities and quangos if this m assive im balan ce is
to be recti® ed (e.g. Beresford & Cam pbell, 1994; O liver, 1997). Even when disabled
 Researching Disability Politics 79

people acquire the academ ic credentials for researching in disability studies and
elsewhere, their employm ent prospects will be lim ited, and neither funding nor
em ployin g organisations have thought through the resource implications in assisting
som eone with physical or sensory im pairm ents to undertake ® eldwork in terms of
travelling, interviewing, transcribing, etc. (Olive r & Barnes, 1997).
In spite of all this, the reasoning behind the claim that non-disabled researchers
have no righ ts to represent disabled people is still ¯ awed and on vario us counts.
Firstly, there is a danger that activists con¯ ate political and intellectual representa-
tionsÐ for exam ple, as a researcher I sought to elaborate a theoretical representation
of self-organisation which would capture m y interview ees’ narrativ es with accuracy
and adequacy, but I was not directly seeking to `represent’ any group in any political
forum . Indeed, even some disabled people have insisted upon retaining a distinction
between their roles as activists and academ ics in the service of integrity and
independence (see Shakespeare, 1996b ). Secondly, there is also a danger of dem ar-
cating sam eness from otherness in such a way that everyone is potentially m isrepre-
sentedÐ for exam ple, physically im paire d people are sim ply not the sam e as learning
disabled people, and indeed otherness-qua-uniqueness is written into our personal-
ities and biograp hies. Even if a researcher experienced the sam e im pairm ent as his
or her research subjects, s/he would need to be attuned to the otherness of the other,
and any presum ptions of sam eness in experiences or world-views would eclipse the
alterity of the other as well as the valid ity of the research (see Kitzinger and
W ilkin son, 199 6).
Thirdly, there is a growing appreciation am ong critical researchers that the
exposure and eradication of oppressions needs to be m ultidirectional and multidi-
m ensional. For exam ple, feminists are increasingly recognising that they need to
engage directly and critically with m en if the prism of sexism is to be unlocked (e.g.
Stanko, 19 94) and some m en are m aking a journey through gender studies in ways
that allo w them to interrogate not only men and m asculinity but also feminist
standpoints and scriptures (e.g. Liddle, 1996). Fourthly, the essentialis t paradigm
which insists upon the ethical and epistemological superiority of like-researching-lik e
is being bracketed. As a black researcher. Phoenix (1994) has encouraged her white
colleagues to participate in interviewing black people on the grounds that the
black-to-black interview scenario reifies identities and reduces outcom es, and that if
`race’ is a variable in knowledge-production, then the deployment of researchers
with different `racial’ identities will open up m ore possibilitie s for understanding.
Indeed, there are already exam ples in disability studies of a hearing person research-
ing deaf culture (Harris, 199 5) and hearing and deaf researchers working together
with deaf people (Jones & Pullen, 1992), which dem onstrate that cross-cultural
dialogu es are capable of illum inating aspects of each world which m ay otherwise
have been hidden to `insiders’ . This m ust surely be at the heart of the emancipatory
paradigm in its quest to em power disabled people and re-educate their non-disabled
others.
It has been recognised for som e tim e by disabled academ ics that the social
relatio nships of research are but one com ponent of an em ancipatory paradigm . On
the one hand, we need to rem em ber the m aterial relatio nships of research pro-
80 J. C. H um phrey

duction as dissected by Zarb (1992) . T hese are owned and controlled by overlap-
ping e lites, notably government departm ents, universities and com m ercial enter-
prises, whose pro® le is predominantly white, male, m iddle class and non-disabled.
T he establishment is wedded to vario us categoric al imperativesÐ the national im per-
atives of econom ic competitiveness and value for m oney in term s of research funding
(e.g. D ean, 19 96); the intellectual im peratives of objectivity, valid ity and reliability
in term s of researcher orientations (e.g. H amm ersley, 1995), and the social-demo-
cratic im perative s of consultatio n and participation in term s of research ethics (e.g.
Lee, 1993). Such imperatives enjoy neither equality nor harm ony, and only the ® nal
one offers an olive leaf to critical researchers. On the other hand, we m ust re¯ ect
upon the m aterial conditions of enhancing services and quality of life. T he frank
discussions in Lloyd et al. (1996) illu strate that even when the ethic of partnership
governs the research project, other problem s m ay be intractableÐ stake-holder
groups include policy-m akers, service-providers, service-users, academ ics and
activists, and their interests are diverge nt. Translating needs and demands into
practical m easures is at the m ercy of politic ians and m anagers. After completing his
own empirical project, Oliver (1997) candidly adm itted that he and his co-
researcher were the principal bene® ciaries (alth ough arguably this hinges upon a
rather narro w calculatio n of `bene® ts’ ).
An emancipatory paradigm places all disability researchers into a dilem matic
position, albeit this will be in¯ ected by their identity as disabled or non-disabled.
T he dilemm a for the non-disabled researcher is that s/he has becom e a kind of trope
in som e sections of the disability movem entÐ a sym bol of all that is wrong with the
disabling societyÐ which detracts attention from deeper problem s which m ight be
better tackled by a broader `working together’ process. If this is the case, then the
problem could be com pounded by attempts to re-work the divide between disabled
versus non-disabled researchers. M ike Oliver (1996) applied the G ram scian schem a
of organic versus positional intellectuals to this divid e, arguing that disabled people
engage in disability studies for its own sake and in the service of the m ovem ent, but
the contributions of non-disabled people are outgrow ths of their academic positions
and signposts to their career advancem ent. W hilst acknowledging that these contri-
butions are often valid and valuable, he suggests that non-disabled researchers are
less likely to be `com m itted’ to the movem ent and more prone to `distortions’ so
that sooner or later they m ay `sell out’ (p. 169). M y own experiences would cast
doubt over this spectreÐ pursuing disability research and writin g as a `non-disabled’
person underm ined m y credibility and delayed my em ployability as a sociologist,
and I was repeatedly advised to gear publications to `m ainstream’ journals in the
course of form al interviews and informal conversations alike , with my interest in
disability issues received with incredulity. It m igh t be m ore helpful to follow
Connolly’ s (199 6) argum ent that what m atters is not so much `who’ is doing the
research in term s of their ascribed charac teristics, but rather `who’ they are in term s
of their own integrity and re¯ exivity, `what’ kind of research they are undertakin g in
terms of their epistem ological and m ethodological orientations, and `why’ they are
doing it in terms of their biograph ical and political pro® les.
The dilem ma for the disabled researcher is that s/he could becom e devoured by
 Researching Disability Politics 81

the m odel that s/he has helped to create, and distrusted by the movem ent which
s/he has championed. It seem s that M ike Olive r and Jane C am pbell stumbled
across this dilem ma when the G reater M anchester Coalitio n of D isabled People
refused to participate in their research into the history of the m ovem ent (Olive r,
19 97). If this re-bounding dynamic continues to operate, then perhap s m ore
disabled researchers will follow T om Shakespeare’ s leadÐ `[I]s The Sexual Politics of
Disability em ancipatory research? T o be honest, I don’ t know and I don’ t really
care. I am a pluralist, and would rather follow m y own intellectual and ethical
standards, rather than trying to conform to an orthodoxy’ (199 7, p. 185). The
courage behind this statem ent is undeniable , and the space of the lib ertarian should
be safeguarded at all times and from all sides. Yet I am not convinced that it
resolves the dilem m a. Rather, I suspect that it only resolves it at an individual level
for a few free spirits. I would prefer to adhere to a more earthy notion, such as
M ichael W alzer’ s `connected critic’ (see T urner, 1989). The connection is about
the salience of moral conscience and politic al com m itm ent; the criticism is about
the quest for freedom and truth; and the refusal to sacri® ce one to another is the
de® ning feature of critic al research. However, such m atters are not to be under-
stood sim ply at the level of the individual; the researcher is alw ays already linked up
to the com m unity of the oppressed and the com m unity of inquirers. Indeed, it is
these collectivities which ensure the solidity of the connection and the stringency of
the criticism . The chasm between comm unities is productive of dilemm as, but
these dilem m as m ay themselves be m ore productive than the ones they displace.
Perhaps we need to re-think what unites and what divides activists and academ ics
beyond the disability crucible?

Conclusions

A s a result of researching disability politics in UN ISO N as a `non-disabled’ aca-

demic-activist who came to realise that disability oppression had shaped her life
alongside gender and sexuality oppression, I have arrive d at the conclusion that the
social m odel in practice is grounded upon a dubious premiseÐ nam ely the antinom y
between `disabled’ and `non-disabled’ people. In term s of identity, this leaves no
scope to deal adequately with those who cross-over between disabled and non-dis-
abled worlds, or with those who inhabit a lim inal space. In term s of politic s, it lends
itself to a separatism which closes off m any doors to coalition and transform ation.
In term s of research, the danger is that the pervasive structural, cultural and material
problem s facing disabled and other disadvantaged people may be neglected in favour
of critiquing or circum scribin g the role of researchers who are would-be allies. These
are controversial claim s, which clearly need to be investigated further by other
people who have live d, worked and researched on other sites. They do not entail the
demise of the social m odel as such, but they do pose creative challenges to it. Other
social movem ents and critic al theories have been facing sim ilar challenges, beckon-
ing them towards the so-called `postmodernist turn’ , alth ough this is not without its
own dilem m as (cf. Nicholson & Seidm an, 1995; W ilkin son & Kitzinger, 199 6). In
82 J. C. H um phrey

such transitional times, a `both ¼ and’ standpoint and strategy is likely to offer the
m ost ¯ exibility, although such `livin g with uncertainty’ is easier from som e positions
than others.
I have suggested that disabled activists and academ ics m ight like to consider the
trilogy of identities, issues and ideologie s in m ore depthÐ in particular, it m ay be
fruitful to consider the points at which they converge or diverge, and the reasons for
prioritisin g one over the other(s). To date, it seem s that `identity’ has been privi-
leged, which is a perfectly good starting-point for an oppressed group, providing that
group members are sensitive to the diversity within their ranks and the processes of
creating and traversing group boundaries. M y own conviction is that if a social
m ovem ent is to ¯ ourish in the longer term, `identity’ needs to be tied in with `issues’
and `ideologies’ in order to open up the possibilitie s for coalition s with other
oppressed groups and transformations of the wider society. In the process, identity
will be displaced from the centre-stage, alth ough this does not m ean that it is
supplantedÐ all social m ovements are grounded upon subjectivity, but subjectivity is
itself open to transformation as a result of praxis (e.g. Phelan, 19 95). I doubt that
`issues’ around discrim ination can be artic ulated let alone altered without tackling
the things that disabled people share with other disadvantaged people. If we re¯ ect
upon Fraser’ s (199 5) schem a, the politic s of redistributing resources will also be
relevant to all poor people and m any of our elders, whilst the politics of revaluing
stigm atised identities will also be relevant to all lesbians, gay m en and people from
ethnic m inoritie s. I doubt that any m ovem ent, let alone a coalitio n of movem ents,
can be furthered without a shared `ideology’ in term s of an understanding of what
is wrong with our world and a vision of a better world. If we consider Y oung’ s
(1990b ) discussion of relatio nal justice, it seem s that a better world-order will be
nurtured as m uch from our being, doing and relatin g as from our possessing, using
and consum ing, which suggests that if we are not learning how to live and work
together along the journey to a non-oppressive society, then we will never reach our
goal.
It is not so m uch that links between identities, issues and ideologies are not
m ade by disability activists in UN ISO N and elsewhere. It is rather that identity has
been reduced to speci® c types of im pairm ent in a m anner which can only restrict
politic al praxis; and that praxis has, in turn, been harnessed to a speci® c paradigm
in a m anner which can only restrict critical research. The potential for disability
politic s to change the world is im m ense, and the real trage dy is that it rem ains
dorm ant. For exam ple, the concept of `norm alising regim es’ could hold a key to
forging coalition s between differently disabled people and other stigmatised peoples
and re¯ ecting back to non-disabled people the precariousness of their `norm ality’ .
H owevers, a key is not about locking ourselves in: it is about opening a door
outwards.

Acknow ledgements

T his project was sponsored by the ESRC (award num ber R004 295341 60). I am
indebted to Julian Eve, form er GP at St Faith s’ surgery, for sustaining his faith in
 Researching Disability Politics 83

himself and his patient again st m any powerful others, and often again st the odds. I
would like to thank Jay Bernstein, previously Professor of Philosophy at Essex
U niversity, who assisted with the process of bringin g some repressed connections
back to consciousness. I would also like to acknowledge the social policy team at the
O pen U niversity for nurturing a non-judgmental cultureÐ without such a safe space,
it would be im possible to write publicly about such personally sensitive subjects.

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