The role of agency within the discourse between the sociologies of impairment … (HaSCA)
The role of agency within the discourse between
the sociologies of impairment and the social model of disability
A discussion paper for
The Health and Social Care Alliance’s “12 Propositions Group”,
by Jim Elder-Woodward, OBE
“We shouldn’t be afraid of who we are … (we should) work together to stop oppression” 1
This paper has been written by myself, with comments from friends and colleagues.
However, it should not be construed as being representative of any organisation, or
group, with which I am associated. Therefore, it must not be copied or referred to by
any person or organisation, without my expressed permission.
Disclaimer
In researching the background for this paper, I have discovered a mass of material
and a cacophony of social and political philosophies around the various models and
definitions of ‘disability’ / ‘disablement’ to which this paper cannot do justice.
I do not have the room to do justice to the various ‘sociologies of impairment‘.
Therefore, this paper cannot be seen as being in anyway ‘academic’,
comprehensive, or definitive. It can only be seen as ‘work in progress’; open to
debate, criticism and correction. However, I do hope it will serve as an initial
discussion paper for that is its purpose.
The “12 Propositions Group” convened by The Health and Social Care Alliance
(known as “The ALLIANCE”) has decided to find a commonly acceptable
understanding of ‘disability’ with which members of the Group can live. It is to assist
this understand of the complexities and issues around the various meanings of the
term ‘disability’ that this paper has been written,2
Nevertheless, by introducing and debating the term ‘disability’ in so many ways,
there is always the danger in making the meaning of ‘disability’ ultimately
meaningless. By at least acknowledging the diversity of opinion around the
definitions / models of disability, I hope all within the 12 Propositions Group can be
more comfortable working together.
Stated by participant at the “Boxed in?” debate about identity, February, 2012, organised by the
Independent Living in Scotland Project See http://www.ilis.co.uk/independent-living-policy/boxed-indebate/boxed-in-report (accessed 21/12/2012)
2 For information about The ALLIANCE see http://www.ALLIANCE-scotland.org.uk/?rfrm=ltcas and for
information about the Disabled People’s Movement in Scotland, see http://www.ilis.co.uk/;
http://www.inclusionscotland.org/; http://www.sdef.org.uk/; and http://www.sdsscotland.org.uk/
(accessed 21/12/2012)
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The role of agency within the discourse between the sociologies of impairment … (HaSCA)
Summary
It has been said that UK disability activism is “bifurcated”, i.e. divided into two camps.
Within the first consists of pan-impairment, disability groups, who constitute the
Disabled People’s Movement (DPM) which addresses the social model of disability,
and affirms that the causes of such can be found in the material world of
environmental, organisational and attitudinal barriers.
Within the second are what are termed, “biological citizens”, i.e. single impairment
groups who “embrace the specialist medical and scientific knowledge associated
with their ‘condition’…”3
The Health and Social Care Alliance, (The ALLIANCE) as the name implies, is one
of mainly single impairment groups, the main activities of which predominantly lie
within the medical and social care fields.
“The ALLIANCE” hopes to promote its “12 Propositions for Social Care” to ensure
such propositions influence the outcome of the forthcoming governmental integration
of health and social care in Scotland. This document was written in partnership with
such pan-impairment disability groups within the DPM who follow the social model of
model and promote the wider concept of independent living.
In order to accomplish such influence, “The ALLIANCE” has set up a working group
of all parties involved in the publication of the document. However, tensions and
complements within the “12 Propositions Group”, around its philosophical and
political divisions, have been identified.
This paper sets out the arguments within such bifurcation and tries to look at the
tensions that creates in the movement towards what is generally accepted as a
common goal; that of (a) choice and control (or ‘personal agency’) over one’s life and
support systems to that life and (b) full and active participation as equal citizens in
the economic, social, cultural and civic life of society at large.
This paper does not attempt to bridge the division. It merely hopes that by setting out
the issues and tensions, the work between the two camps may be facilitated by
common understanding and acceptance of each other’s stance.
Nevertheless, the paper concludes by suggesting that despite the tensions and
opposing philosophies, both camps may on one level at least support the person’s
agency, or power, to manage not only their own individual condition and personal
support system, but through both personal and collective action, challenge and
demolish those societal barriers which forbid their full, and equal participative
citizenship within society at large.
Hughes, Bill (2009) “Disability activisms: social model stalwarts and biological citizens”, Disability
and Society, 24:6,677-688, p677
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Background
Within the forthcoming months of 2013 there will be much debate around the
Scottish Government’s plans to integrate health and social care. The voice, or
voices, of those ‘patients’ and ‘clients’, who will be at the receiving end of any
outcome of such plans, are important contributors to this discussion. However,
unless they are harnessed effectively their efficacy may well be diminished by other
more strident and powerful ‘professional’ voices within the debate.
This has already happened in Northern Ireland, where the dominant health
professional voices led to an integrated health and social care system which is
mostly governed by health professionals, directed by health matters and guided by
health outcomes, rather than those of the end users.4
However, as Bill Hughes 5 asserts, disability activism in the UK has been bifurcated
into two distinct branches, or camps; those situated within the disabled people’s
movement and those within single impairment / condition groups. He further argues
that these two branches are “…divided in their respective views as to the meaning,
import and vision of the past, present and future for disabled people.”6 As Hughes
states:
“The Disabled People’s Movement (DPM) in the UK rejects the view that
disability is an illness. For the DPM it is the social processes of discrimination
and oppression that create the material circumstances out of which solidarity
and politicisation arise. The DPM has also been shy about impairment,
arguing that it is generally irrelevant to the issue of disability and that a clear
distinction between impairment and disability is necessary if disability is to be
understood as a basis for identity politics. The biological citizens that support
embodied health movements use impairment, genetic status, biomedical
diagnosis and classification as calling cards that signal their claims to identity.
Whilst the DPM has challenged medical hegemony and scientific ideas, many
‘biosocial’ groups embrace the specialised medical and scientific knowledge
associated with their ‘condition’, particularly where it might be used to
enhance their claims to citizenship.”7
Heenan D and Birrell D (2006) The integration of health and social care – the lessons from Northern
Ireland, Social Policy and Administration, 40, 47-66; and Heenan D and Birrell D (2009)
Organisational integration in health and social care: Some reflections on the Northern Ireland
experience, Journal of Integrated Care, 17, 5, 3-12
5 Professor of Sociology at Glasgow Caledonian University
6 Hughes, Bill (2007) “Being Disabled: towards a critical social ontology for disability studies”,
Disability and Society, 22:7, 673-684 and Hughes, B. (March 2012) “Further reflections on biological
citizens and social model stalwarts: questions of biology, ontology and human worth”, Handicap
Fremadrettet – Viden og Faglige Perspectiver, Odense, Denmark, p1
http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&sqi=2&ved=0CDQQFjAA&url
=http%3A%2F%2Fwww.servicestyrelsen.dk%2Faktiviteter%2Fhandicap%2Fgamleaktiviteter%2Fhandicapfremadrettet%2FBillHughespaper.pdf&ei=XEXTUP7kOeSM0wW76YH4CA&usg=AFQjCNF_jz75Ybi5
adJee0XzI9TpQNh5uQ&sig2=J1UFyvjzrTBXYlpIINhbVQ&bvm=bv.1355534169,d.d2k (accessed
21/12/2012)
7 Hughes, Bill (2009) “Disability activisms: social model stalwarts and biological citizens”, Disability
and Society, 24:6,677-688, p677
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I am hoping that the 12 Propositions Group convened by The ALLIANCE will find a
way to overcome this bifurcation and acquire some common understanding of the
various viewpoints if not an agreed resolution of the multifarious positioning of these
two camps.
The 12 Propositions Group was set up after the publication of The ALLIANCE’s
document, “12 Propositions for social care: a discussion paper for long term
conditions and social care dialogue event”, prepared by Jim McCormick of the
Joseph Rowntree Foundation, in 2012. This event was to garner the thoughts of
disability organisations, on what they thought should be the guiding principles for the
forthcoming health and social care integration.8
The Group’s purpose now is to ensure that there will be enough momentum behind
the 12 Propositions to enable them to influence some of the outcomes of the Scottish
Government’s plans to integrate health and social care in the favour of the end user.
The Group consists of representatives from both single impairment voluntary
organisations and representatives of disabled people’s organisations, alongside
those representing professional bodies.
During the meetings of the Group, it became clear that there was an obvious
‘elephant in the room’ which had to be addressed – that of the historical differences,
which the membership shared, of perception within the philosophical and political
ontology of the term, ‘disability’, with its consequential epistemological issues and
geography of concerns.
Agency
However, before delving into the various definitions and their philosophical
ramifications, it might serve to agree a common viewpoint from which to reflect or
judge their applicability to the task at hand.
Hopefully, we, from both branches of the bifurcation, can all agree that our common
objective is to secure the person’s right to be in control of her own life and that
support system which makes her life enjoyable and fulfilling. That person may
require assistance in such choice and control mechanisms, but basically it will be her
quality of life, as defined by her, which should be secured. And hopefully this can be
agreed whether we term that person as ‘disabled’ or ‘with long-term conditions’.
Again, hopefully, we can all agree that such ‘power’, or ‘agency’, can be used, both
individually and collectively, to influence if not overcome not only the barriers within
society at large which limit the full and equal participative citizenship of disabled
people, but those within the experience of ‘being’ a disabled person.
The objectives of both main cohorts within the Group, therefore, seem to be similar.
8
See Appendix 1
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Within the sphere of The ALLIANCE the advocacy for ‘self-management’ is
somewhat akin to that for ‘independent living’, which is advanced by the DPM.
The ALLIANCE’s definition of ‘self-management’ is:
“Self-management is the responsibility of individuals. However, this does not
mean people doing it alone. Successful self-management relies on people
having access to the right information, education, support and services. It also
depends on professionals understanding and embracing a person-centred,
empowering approach in which the individual is the leading partner in
managing their own life and condition(s).”9
And within the DPM, ‘independent living’ means:
“…disabled people of all ages, having the same freedom, choice, dignity and
control as other citizens at home, at work, and in the community. It does not
mean living by yourself, or fending for yourself. It means rights to practical
assistance and support to participate in society and live an ordinary life”.10
The DPM believes that with such support, disabled people can exercise their rights
and duties of citizenship via their full and equal participation in the civic, cultural and
economic life of Scotland; and so I believe does The ALLIANCE.
I am aware that the word ‘agency’ has a common parlance within the field of social
care as an organization or business which provides care, or monitors care.
However, it is this common direction of choosing and controlling, which I shall call
‘agency’.
According to the Oxford Online Dictionary, ‘agency’ means: “a thing or person that
acts to produce a particular result” 11 ; or, as Andrew Feenberg 12 defines it, the
“capacity to act”.13 It is within this definition of ‘agency’, which I shall pursue.
Agency can refer to ‘self’ as well as ‘group’, or ‘citizenship’. In addition, as Feenberg
suggests, the capacity to act implies three conditions: knowledge and power, and an
appropriate occasion:
“Agency is reserved for domains in which action is both personal and
informed, and in which it is appropriately so. Politics is the prime example and
LTCAS (2008) “Gaun Yersel: Self-Management Strategy”, LTCAS and the Scottish Government,
Glasgow, p8
10 ILiS (2009) “The Essential Guide to Independent Living” p2
11 See http://oxforddictionaries.com/definition/english/agency (accessed 21/12/2012)
12 Professor of the Philosophy of Technology in the School of Communication at the Simon Fraser
University in Canada ,
13 Feenberg, A (2011) “Agency and citizenship in a technological society” Public Lecture presented to
the Course on Digital Citizenship, IT University of Copenhagen. www.sfu.ca/~andrewf/copen5-1.pdf
(accessed 22/12/2012)
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we call agency in this domain citizenship. Citizen agency is the legitimate
right and power to influence political events.”14
Melissa Williams15 expands this concept to that of ‘shared agency’ within the context
of citizenship:
“When we gaze at Western traditions of democratic citizenship, two broad
functions stand out as crucial, and they are likely to remain so even if the
contexts and institutions of citizens change dramatically. One of these – selfrule – is the legacy of classical and modern republicanism; the other – selfprotection – is the achievement of modern liberalism. Beginning with
Aristotle, citizenship has been understood as an integral part of the project of
human freedom. To fulfil the human potential for freedom, we must learn to
govern ourselves both as individuals and as collectivities” 16
If we are to develop networks and ALLIANCEs, including welfare professionals and
clients/users, within this 12 Propositions Group, I believe we have to turn to these
questions of citizenship, voice(s) and agency.
Citizenship matters because it can exclude as well as provide. Within liberal
democracies at least, it is the passport to enter the realm of the political. It is worthy
to note that in ancient Greek, the historical home of citizenship, the word for an
‘outsider’ or ‘a private person’ who chose not to exercise his right (for not everyone
at that time in Greece had that privilege) to participate in public or civic life, was
‘idiot’.17
There are two distinct accounts of citizenship within traditional political theory: the
liberal theory which associates citizenship with status and the possession of rights,
and the civic republican which associates citizenship with more active participation in
the pursuit of the good for a particular community18.
It is within this context of agency, of ‘the capacity to act’, in a knowledgeable,
powerful way, and in appropriate and relevant settings, as an individual, group, or
citizen that I now turn to look at the multi-various definitions of ‘disability’. The
confines of this paper does not allow me to show how each one of them advances or
deters the disabled person’s agency, but hopeful I may cover the common generic
ground of the argument.
Before leaving the subject of ‘agency’, it is only fair to point out that the term can also
refer to ‘selfhood’, and identity, as well as how we react to our situation. So as well
14
ibid p 1-2 (accessed 22/12/2012)
Professor of Politics at the University of Toronto
16 Williams, M S (2009) “Citizenship as agency with communities of a shared fate; in Bernstein, G and
Coleman, W D, “Unsettled Legitimacy: Political Community, Power and Authority in a Global Era, UBC
Press, Toronto pp45-47
17 See Sandel, M (2009) “Justice: What’s the right thing to do?”, Penguin, London
18 See http://plato.stanford.edu/entries/citizenship/ (accessed 21/12/2012)
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as exercising power over extrinsic matters, one’s agency can also have power
exercised over intrinsic or psychological matters. As Steve Smith19 says:
“… the capacity for human agency provides a person with the possibility at
least of dynamically engaging with her experiences. This engagement would
involve that person stepping back from, and freely interacting with, her social
and other circumstances, so reflecting and responding to them, often in very
surprising and life-enhancing ways. Consequently she can develop a
capacity for choice, including a choice of perspective on her life that is
subjectively and reflectively ‘self-catering’, and so therefore not wholly
amenable to objectified interpretation and epistemological prediction
concerning her wellbeing, happiness, human flourishing and so on.” (Original
emphasis)20
Smith argues that such subjective agency driven responses to define, objectively,
disadvantage can be both dynamic and life-enhancing; and even when they are not,
such negative outcomes can only be a matter of degree.
Definitions of disability
Unfortunately there is not the time, nor the space, to describe the different definitions
of disability in this paper.
Within the ‘medical model’ of disability, however, Jerome E Birkenbach 21 has
conveniently tabulated seven of them and I have found another two which are
discussed by Steven D Edwards. 22 Nevertheless, there are many more in the
literature, each claiming its own legitimacy and relevance. (See Tables 1 and 2
below; page 8 and 9)
The prime characteristic of all such medical models is the assumption of the causal
relationship between impairment and disability, that disability is the result of having
an impairment. This is refuted by the social model, which sees a distinction between
impairment and disability. Disability, within the social model, is caused by society
not by impairment. Disability is the result of a hostile society which bars the full and
equal participative citizenship of impaired people by throwing up environmental,
attitudinal and organisational barriers against them.
19
Professor of Political Philosophy and Social Policy at The University of Wales, Newport
Smith, S. R (2011) “Equality and diversity: Value incommensurability and the politics of recognition”,
Policy Press, Bristol, p123
21 Professor and Queen’s Research Chair of Philosophy of Law and Disability Studies at Queens
University, Canada
22 Professor of Philosophy of Healthcare and Disability at the University of Wales Swansea
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Table 1: Models, components and conceptual meanings of ‘disability’ (as described by Bickenbach 2012) 23
Model of disability
Nagi
(1965, 1969, 1977, 1991)
Social
(UPIAS 1976; Oliver 1990, 1992,
1996)
Verbrugge and Jette (1993)
Components of the model
 Pathology
 Impairment
 Functional limitations
 Disability
 Impairment
 Disability








Pathology/disease
Impairment
Functioning limitation
Disability
Pathology
Impairment
Functional limitation
Disability
ICIDH – 1
(WHO 1993)



Impairment
Disability
Handicap
ICIDH – 2
(WHO 1997)

Body
function
and
structure (impairment)
Activity
(Activity
limitation)
Participation
(Participation restriction)
Contextual
factors:
environment and personal
Institute of Medicine (Pope and
Tarlov 1991; Brand and Pope
1997: Field and Jette 2009)



Quebec (DPC)
(Fougeyrollas
1989,
Fougayrollas et al 1998)
1995;




ICF
(WHO 2001)




Risk factors
Personal factors
- Organic
systems:
integrity / impairment
- Capabilities: ability /
disability
Environmental factors
- Facilitator / obstacle
- Life habits
Social participation /
handicap
Body
function
and
structure (impairment)
Activity
(Activity
limitation)
Participation
(Participation limitation)
Contextual
factors:
environment and personal
Conceptual meaning of ‘disability’
Pattern of behaviour that evolves in
situations of long term or continued
impairments that are associated
with functional limitations
Limit or loss of opportunities to
take part in community life because
of physical and social barriers
Disability is experiencing difficulty
doing something in any domain of
life due to a health or physical
problem
The expression of a physical or
mental limitation in a social
context – the gap between a
person’s capabilities and the
demands of the environment
In the context of health experience,
any restriction or lack (resulting
from an impairment) of ability to
perform an activity in the manner
or within the range considered
normal for a human being
Disability is an umbrella term
comprising
impairments
as
problems in body function or
structure as a significant deviation
or loss; activity limitations as
difficulties an individual may have
in the performance of activities;
and participation restrictions as
problems an individual may have
in the manner or extent of
involvement in life situations
No conceptualisation of disability
as such, rather a model of the
‘disability creation process’
‘an explanatory model of the
causes and consequences of
disease,
trauma
and
other
disruptions to a person’s integrity
and development.’
As in ICIDH-2 cf:
‘Disability is a difficulty in
functioning at the body, person, or
societal levels, in one or more life
domains, as experienced by an
individual with a health condition
in interaction with contextual
factors’ (Leonardi et al 2006)
Bickenbach, J E (2012) “The ICF and disability studies”, p54: in Watson, N, Roulston A & Thomas,
C “Routledge handbook ok disability studies” Routledge, London and New York
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Table 2: Other models, components and conceptual meanings of ‘disability’ (as described by Edwards24,
but reconfigured along the lines of Birkenbach 25
Model of disability
John Harris in J. of Medical Ethics
2000, 26, pp. 95-100
L Nordenfelt (1993: 22) “On the
notions of disability and handicap”
Social Welfare, 2: 17-24
Components of the model
 Conditions
 Disability
 Harm





Disability
Non-ability
Handicap
Goals
Condition
Conceptual meaning of ‘disability’
… Disability (is) a physical or
mental condition we have a strong
{rational} preference not to be in
and that it is more importantly a
condition which is in some sense a
harmed condition.
A disability, as well as a handicap,
is a non-ability – given a specified
set of circumstances – to realize
one or more of one’s vital goals (or
any of its necessary conditions)
It must be understood that the ‘social model’ was designed by disabled people
themselves at a time when they were even more segregated and oppressed within
society, than they are today. In 1974, they formed themselves into the Union of the
Physically Impaired Against Segregation (UPIAS) to find a way out of their
incarceration and oppression by a society which saw them as being ‘deviant’.26
Their ‘leader’, Paul Hunt who resided in a Leonard Cheshire Home in Hampshire
communicated by letter, or ‘round robin’ newsletter, with others most of whom were
either incarcerated in other Homes (with a capital “H”) or confined within their own
home by an inaccessible environment and discriminatory community.
As Bill Hughes writes:
“By the end of the nineteenth century, confinement, institutionalisation, and
dependency had become the reality of disabled people’s lives. Disabled
people became (i.e. were inscribed as) people who could not do things for
themselves, who were a burden, a group in need of intensive and intrusive
systems of surveillance. When one follows Foucault’s27 argument about how
the history of “modes of objectification …transform human beings into human
subjects” …. and applies that argument to impairment, one can begin to
appreciate how throughout modernity, disabled people’s lives have been
blighted and demeaned by a degree of supervision that is probably without
historical parallel. Pathologized by medicine, imprisoned by disciplinary
power in ‘special’ spaces, normalised by strategies of rehabilitation: this is the
modern history of disability in a chilling nutshell, one that makes Foucault’s …
description of the great confinement, in particular, and the ‘carceral society’
(with its techniques of power that underpins modern capitalism) in general, a
Edwards, S D (2005) “Disability: Definitions, value and identity”, Radcliffe, Abingdon, Oxon
Birkenbach op cit p54
26
See E. J. Miller and G. V. Gwynne, (1972) “A Life Apart: A Pilot Study of Residential Institutions for
the Physically Handicapped and the Young Chronic Sick”, Tavistock Publications, London
27 A French philosopher who thought that the body, or person, developed principally by and through
external factors
24
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powerful conceptual framework that will continue to animate debates in
disability studies.”28
It was within this historical and ethnological background that UPIAS developed the
social model and definition of disability.
To the UPIAS in 1976, fundamentally, disability is:
“…. a situation, caused by social conditions, which requires for its elimination,
(a) that no one aspect such as incomes, mobility or institutions is treated in
isolation, (b) that disabled people should, with the advice and help of others,
assume control over their own lives, and (c) that professionals, experts and
others who seek to help must be committed to promoting such control by
disabled people.”29
These principles still serve as being core to the independent living movement today,
not just in Scotland, but around the world. In Scotland, however, we have eliminated
some, but not all, of those social conditions, particularly in the development of selfdirected support; and much of that was due to political pressure by the Scottish DPM
and its supporters in the dialogue between both of them and policy makers at both
local and central government level.
Nevertheless, the original UPIAS definition of ‘disability’ was very simple (too simple
say its critics):
“Disability is something imposed on top of our impairments, by the way we are
unnecessarily isolated and excluded from full participation in society.
Disabled people are therefore an oppressed group in society….
“….We define …disability as the disadvantage or restriction of activity caused
by a contemporary social organisation which takes no or little account of
people who have physical impairments and thus excludes them from
participation in the mainstream of social activities. Physical disability is
therefore a particular form of social oppression.”30
To UPIAS, and the subsequent DPM, there was not just a philosophical point made,
but a ‘political’ decision, to clearly separate ‘disability’ from ‘impairment. To the DPM
“impairment is lacking part or all of a limb, or having a defective limb or mechanism
of the body”.31
Attempts to find some common ground within this medical / social model divide are
rare. The major discourse between the various protagonists in this debate has led
them to ignore each of the others’ criticism. Yet a few have tried to accommodate
28
Hughes (2005) op cit p83
UPIAS (1976) “The Union of the Physically Impaired Against Segregation and The Disability
ALLIANCE discuss Fundamental Principles of Disability”, p3
30 UPIAS, op cit p1 and p14 (accessed 28/12/2010)
31 UPIAS ibid, p14
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some of the others’ concerns. For example, whilst John Harris 32 continues to
dismiss the UPIAS social definition of disability, the International Classification of
Impairment, Disability and Handicap of 1993 would not have led to that of the revised
one of 1997, or indeed the final International Classification of Functioning, Disability
and Health of 2001, if it were not for the persistence of the Disabled Peoples’
International which continually criticised the WHO for not including the social and
economic dimensions of disability.
In a lecture given to the Servicestyrelsen (a Danish agency ensuring the social policy
of government is implemented equally across the state) Bill Hughes has tabulated
the main characteristics between the two camps. One he calls “Social model
Stewarts” and the other “Biological Citizens”. The table also serves as a summary of
the key distinctions between the paradigms of disability each follows. (See table 3,
page 12)33
I do not believe that Hughes’ tabulation is exclusive.
characteristics which define the bifurcation.
I can think of other
As an example, the DPM is determined that disabled people should be in control of
and manage not only their own lives, but their own peer organisations. The
Movement believes disabled people should speak for themselves, both as
individuals (however facilitated by technology or chosen advocacy) and as
collectives; where those in control of such collectives operate as directly accountable
representatives. Also, the DPM is not in favour of charitable provision, believing
rather in human rights and legal enforcement.
The “biological citizen”, on the other hand seems to be less concerned about direct
representation, and who should speak on her behalf and run her representative
organisations. She is also, by and large, less concerned about charitable provision
and human rights.
However, there are also similarities between the two bifurcated activisms, including
the values of personal liberalism (self-management; choice and control) and
communitarian action (peer support and advocacy).
Nevertheless, the literature around the definition of disability continues to be quite
visceral in language; particularly between those who see a clear division between
‘impairment’ and ‘disability’, and those arguing against that division. There is
nonetheless, a general acceptance that the social model; as well as the UPIAS
definition of disability; have greatly changed the political scene around disability.34
32
Professor of Bio-ethics at Manchester University
Hughes B (2012) op cit pp2-4
34 See, for example, Smith, S R (2010) “Social justice and disability: competing interpretations of the
medical and social models”, in Vehmas, S, Kristiansen, K and Shakespeare, T, “Arguing about
disability”, Routledge, Abingdon, Oxon pp15-29
33
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Table 3: Key distinctions between the paradigms of disability followed by the two camps within disability
activism, as detailed by Hughes35
Social model stalwarts
Social model (Disabled People’s Movement DPM).
Domain or field of activity is politics. Focus is on
justice and rights for disabled people and the
elimination of barriers to the inclusion of disabled
people in social and cultural life. The DPM focuses on
social problems and political solutions
Focus on the dismantling of disablist forms of social
organisation.
Somatophobic36, collectivist approach to disability
issues. Not interested in the body
Basis of solidarity, community, association and
collective action is (consciousness of) the common
experience of social oppression and exclusion amongst
disabled people
Social basis for identity: In their common cause social
model stalwarts use sociological and historical
language and knowledge to establish the case that
disabled people have been subjected to oppression,
discrimination and exclusion.
Social modelists have formed a movement of
emancipation embodying self-identity with the
Disabled People’s Movement
Social epistemology, understanding disability in terms
of social disadvantage and purporting the irrelevance
of medical knowledge, treatment and cure: The
DPM also values the experiential knowledge of
disabled people
Sceptical of genetics arguing the case that it
constitutes a new form of eugenics: ‘genetic
fundamentalism’ is a ‘naturalist mythology that
justifies social discrimination and exclusion’
Anti- medicine: medicine is the enemy, a reactionary
force: Social model stalwarts challenge the social basis
of their ‘pathological’ status treating their bodies
as sources of pride
Politics of scepticism: The promises of medical and
scientific progress are to be taken with a pinch of salt.
The DPM emphasises the history of promised cures
that came to nothing.
Pessimistic: The DPM tends to have a dystopian view
of medical and scientific progress and is likely, for
example, to draw attention to the links between
eugenics and the new genetics, emphasising the
continuity between the latter and the former:
Historical memory: Biology for social model stalwarts
refers to ‘what has been and what is’, to the
historically accumulated injustices that have
invalidated (and continue to invalidate) the lives and
bodies of disabled people.
35
36
Biological citizens
Medical Model (Condition based interest groups):
Domain or field of activity is health care. Focus is to
support sufferers from specific conditions and
encourage medical research and the search for cures.
Biological citizens (in their biosocial groups) focus on
health problems and medical solutions
Focus on the amelioration of bodily deficit.
Centred on somatic individuality and the
correction of vital deficits
Basis of solidarity, community, association and
collective action is biological similarity and common
diagnostic label; hence the possible epithet ‘biosocial
groups’
Biological basis for identity: In their common cause
biological citizens use biological and genetic language
and knowledge to self-identify and therefore to
establish their credentials as biological or genetic
citizens
Biological citizens form condition based movements
embodying self-identification with a particular disease
Medical epistemology, understanding impairment in
medical terms and valuing objective, medical
knowledge and the research that it supports in the
search for treatments and cures
Pro genetics and genomics arguing for genetic
research: Genetic technologies will bring tangible
health benefits that will help people with currently
incurable medical conditions
Pro-medicine: medicine is a partner and the source of
progress. Biological citizens embrace their
pathological status but seek remediation towards its
extirpation by way of medical and genetic
technologies
Politics of hope: Patient self-help groups that seek
recognition as certain kinds of biological citizens
‘invest hope, political capital, their own tissue samples
and money in the search for genetic treatments’
Utopian: the benefits of biotechnology are legion and
the health dividends or ‘health use-value’ associated
with genetic knowledge is potentially more potent than
any advance in human history
The future belongs to social change and Future
orientation: ‘Increasingly biology refers to what might
be’. The claim is suggestive of a (coming) post-human
society in which living organisms can be modified and
manipulated in significant ways. Biological citizens
are aligned with this.
Hughes (2012) op cit pp2-4
Fear of matters relating to body
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For many disabled people, they have found that ’eureka’ moment when realising
that their sense of oppression and degradation wasn’t their fault; and they didn’t
need to wait for a cure to overcome those feelings. It has also given them the
understanding of their own abilities to change the things that oppress and degrade
them through joint political action. It has also shown them the virtue of ‘collective
action’ by joining with other disabled people to challenge the barriers which exclude
them.
Indeed, like Mellissa Williams, Kathryn Woodward37 argues that as well as having an
identity as an individual, of whatever kind, there can also be shared identity. Identity
politics, as described by Woodward, “involves claiming one’s identity as a member of
[a] marginalised group as a political point of departure and thus identity becomes a
major factor in political mobilization.”38 As our identity also involves our association
with family, profession, social status, and culture, so it involves our association with
theological and political thought.
Elsewhere, I have contended that the tension between organisations based on
impairment, or disability, as well as those based on age, would decrease and enjoy
more political power, support and credence, if they gathered around the political
banner of ‘independent living’39
It is clear that in terms of







redefining oneself and the milieu in which that sits;
reconfiguring services to meet that new definition, in which disabled people
are the prime providers;
asserting one’s self-representation, or peer representation;
mainstreaming the concepts of ‘choice and control’ within social care and
other provision;
politicizing and collectivizing disabled people; and their issues
influencing the process of ‘co-production’ and ‘personalisation’; and
developing, worldwide, a body of respected academic knowledge, called
‘disability studies’:
the social model and the DPM clearly can be seen as providing disabled people with
their own ‘agency’.
However, such politicisation of disabled people, with its emphasis on environmental
and organisational barriers, has been criticised for leaving ‘the medical field’ of
impairment and disease, open to the colonisation of medics and paramedical
professions.40
37
Staff Tutor in Sociology at the Open University
Woodward, K (1997) “Identity and Difference”, Routledge / Open University, p24
39 Elder-Woodward (2013) “Independent living; the frontier of communitarian welfare”, Disability &
Society, http://dx.doi.org/10.1080/09687599.2012.753184 (Accessed 30/01/2013)
40 Crow, L (1996) “Including all of our lives: renewing the social model of disability”, in ‘Exploring the
Divide’, edited by Barnes, C and Mercer, G: The Disability Press, Leeds, pp. 55 – 72.
38
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Gloria Jean Watkins 41 , better known by her pen name, ‘bell hooks’ (without any
capital letters) is quoted as saying:
“Oppressed people resist by identifying themselves as subjects (agents) by
defining their reality, shaping their new identity, naming their history, telling
their story.”42
It is through this domain of ‘narratives’; of people ‘telling their story’; that the practical
application the phenomenological and what is now called ‘auto-ethnological’ 43
approaches to disability has been developed within the field of medical sociology.
As Gillian Bendelow44 and Simon Williams45, put it:
“It is through narratives and theodicies of illness and pain that people attempt
to understand and locate the meaning of their suffering and to effect
realignment between body, self and society.”46
The most well-known proponent of this application, Arthur W Frank 47 has drawn
attention to the agency exercised by people with longstanding illness as they
become 'wounded storytellers'. Patients and people living with illness are
constructed by Frank as active creators of new selves, having life trajectories in a
'remission society'. This, according to Frank, opens up the possibility that illness
experiences involve positive as well as negative outcomes. 48
In Nick Watson’s49 study of disabled people’s interaction with non-disabled people
and the social and physical environment in which they live, he makes reference to
41
Distinguished Professor of Appalachian Studies, at the Loyal Jones Appalachian Center, Berea
College, Lexington, Kentucky
42 Quoted in Shakespeare, T, Gillespie-Sells, K and Davies, D (1996) “Sexual politics of disability:
untold stories” Cassel, London and New York
43 Ethnology is the study of the characteristics of different peoples and the differences and
relationships between them. So ‘auto-ethnology’ is such study by the people themselves. See
http://oxforddictionaries.com/definition/english/ethnology?q=ethnology (accessed 03/03/2013)
44 Professor of Sociology at Sussex University
45 Professor of Sociology at Warwick University
46 Bendelow, G &Williams, S (1995) “Transcending the dualism: towards a sociology of pain”
Sociology of Health and Illness, vol 17 p156
47 Professor of Sociology at the University of Calgary
48Frank, A.W. (1995) “The wounded storyteller: body, illness, and ethics” University of Chicago Press,
Chicago
49 Professor of Disability Studies, the University of Glasgow
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the medical profession’s oppression as expressed by their patronage and denial of
agency.
One such ‘informant’, Lesley, describing her relationship with her district nurse, who
continually patronised her is recorded as saying:
“… Or she brings a student in and she’ll say, ‘This young lady, she’s very
busy, aren’t you Lesley?’ And I just think, ‘Fuck off!’”
He then reports that some of his ‘informants’, as he describes them, take part in
‘training’ (Watson’s own inverted commas) of health service professionals,
“challenging the image of themselves as powerless and reclaiming their agency”. 50
Watson likened such activities to the Boston Women’s Health Co-operative, as
described by Frank, who through their narratives, challenge the way professionals
learn about their lives as disabled people.51
It is always a concern as to the evaluation of the value and efficacy of such
‘narratives’ within any process of challenging oppressive systems and personnel.
There is always the danger of the dominant oppressor marginalising such ‘stories’ as
anecdotes, or seeing them as being irrelevant and non-representative.
Some DPOs and their individual members have also entered contractual training
arrangements with local authorities and health authorities; for example the Glasgow
Centre for Integrated Living has had contracts with Glasgow City Council and NHS
24 to do ‘disability equality training’; the Lothian Centre for Inclusive Living has had
similar contracts in the East; and I have also been an invited lecturer on several
graduate courses in Glasgow and elsewhere.
However, rather than just being based on the ‘felt experience’ of oppression, or living
with an impaired body, or even in relation to the patient/medical practitioner dyadic
relationship, such training by the movement has always been based on a
philosophical construct and viewpoint of society as a whole (whether seen by others
as adequate or not) and within a framework of a recognised and authentic body of
research, debate and data. It should also be noted that some of such research has
been conducted and collated by disabled people, or has actively involved them in the
design and execution of such. The training by DPO’s is also based on the collective
activities and thoughts of those within the movement and promotes such concepts as
human rights and full and equal participative citizenship.52
There is definitely a philosophical divide among sociologists over whether or not
impairment has any locus within disability, with one side being said to ignore the
issues around the psycho-social implications of impairment (which others say are
affected by a non-accommodating society at large) and the other side being said to
ignore issues around oppression and discrimination within a similar nonaccommodating society.
Watson N (2003) “Daily denials: the routinisation of oppression and resistance” in “Disability, culture
and identity” Riddell S and Watson N, Pearson Prentice Hall, Harlow pp43-44
51 Op cit
52 See Elder-Woodward (2005) op cit
50
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The resultant bizarre and rather converse conclusion is that some have said –
impairment is social (affected by a disabling society); and disability is personal, or
‘embodied’ (affected by illness or injury). They say this to make ‘impairment’ as
political as ‘disability’. When a non-disabled person meets a disabled person, the
argument goes, she doesn’t see ‘the disability’, she sees ‘the impairment’, the ‘bodily
difference’, and it is that she repels from and ‘stigmatises’, as well as against which
she discriminates. 53
Unfortunately, I am straying into yet another debate within disability activism, at
large, which I neither have the time nor space to pursue; that between issues of
recognition and issues of redistribution. Here, the argument is around obtaining
and maintaining identity and human rights for different minority groups and/or
redistributing resources within an unequal neoliberal capitalist society. 54
In conclusion, and despite the continuing tensions and opposing philosophies, I
hope that this paper will help both camps within the ALLIANCE’s 12 Propositions
Group to understand each other’s divergent position; work on their commonalities;
and on one level at least, support the person’s agency, or power, to manage not only
her own individual condition and personal support system, but through both personal
and collective action, challenge and demolish those societal barriers which forbid her
full and equal participative citizenship within society at large.
It might be best to sum up by once more quoting Bill Hughes when he was on a
panel at a seminar convened by the Independent Living in Scotland Project in
February 2011, highlighted at the top of this paper. The seminar was looking at
identity, self, community and belonging for disabled people.
At this gathering, Bill Hughes said: “There are barriers to being and barriers to
doing”.55
Perhaps this is the position where the discourse around ‘disability’ and ‘impairment’
within the 12 Propositions group might coalesce. However, I would like to agree with
Alan Roulstone56 when he makes the observation:
“…The shift towards a more diverse and arguably academicised disability
studies risks overlooking the fundamental issues of importance for disabled
people; poverty, unemployment, lack of access to benefits, increasingly
Hughes, B and Paterson K (1997) “The social model of disability and the disappearing body:
Towards a sociology of impairment” Disability & Society, vol 12 no 3, pp325-340
54 See Ferguson, I (2008) “Reclaiming Social Work: Challenging Neo-Liberalism and Promoting Social
Justice”, Sage and Ferguson, I (2011) “Personalisation, social justice and social work: a reply to
Simon Duffy”, Journal of Social Work Practice, http://dx.doi.org/10.1080/02650533.2011.623771
(accessed 27/02/2013) And Fraser, N. (1995) ‘From recognition to redistribution? Dilemmas of justice
in a “postsocialist” age’, New Left Review, vol. 212, pp. 68–93.
55 See http://www.ilis.co.uk/independent-living-policy/boxed-in-debate (accessed 28/12/2012)
56 Professor of Disability and Inclusion at Northumbria University, Newcastle and editor of the journal
Disability and Society
53
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severe rationing of social support all (of which) characterise the early 21st
century.”57
To this list of Roulstone, I would wish to add another fundamental issue of
importance to disabled people – that of agency; the power, knowledge and occasion
to act in relation to one’s self, one’s adopted or inherited group, and one’s full and
equal active citizenship.
Appendix 1
12 Propositions for Health and Social Care Integration58
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
12.
Recognise the context
Adapt to emerging needs
Start with rights …
… and apply personalisation with a purpose
Decide what kind of prevention we seek
Balance generic and specific approaches
Create a system of well-being, not just better social care services
Use money for change
Involve people for change
Shape governance for change
Improve the improvement cycle
Collaborate across all long-term conditions
Roulstone, A (2011) “Review: Exploring Disability: Second Edition, and Understanding Disability:
From theory to practice: Second Edition” Disability and Society, vol 26, no 3 pp375-81
58 Taken from McCormick, J (2012) “12 Propositions for social care: a discussion paper for long term
conditions and social care dialogue event”, The ALLIANCE, Glasgow
57
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