the role of agency within the discourse between the sociologies … role of agency (hasca).… ·...

The role of agency within the discourse between the sociologies of impairment … (HaSCA)

The role of agency within the discourse betweenthe 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.

1 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-in-debate/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)

© Jim Elder-Woodward 2013 1

http://www.sdsscotland.org.uk/

http://www.sdef.org.uk/

http://www.inclusionscotland.org/

http://www.ilis.co.uk/

http://www.alliance-scotland.org.uk/?rfrm=ltcas

http://www.ilis.co.uk/independent-living-policy/boxed-in-debate/boxed-in-report

http://www.ilis.co.uk/independent-living-policy/boxed-in-debate/boxed-in-report


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.

Background 3 Hughes, Bill (2009) “Disability activisms: social model stalwarts and biological citizens”, Disability and Society, 24:6,677-688, p677



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

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

4 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, 3-125 Professor of Sociology at Glasgow Caledonian University6 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%2Fgamle-aktiviteter%2Fhandicap-fremadrettet%2FBillHughespaper.pdf&ei=XEXTUP7kOeSM0wW76YH4CA&usg=AFQjCNF_jz75Ybi5adJee0XzI9TpQNh5uQ&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


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%2Fgamle-aktiviteter%2Fhandicap-fremadrettet%2FBillHughespaper.pdf&ei=XEXTUP7kOeSM0wW76YH4CA&usg=AFQjCNF_jz75Ybi5adJee0XzI9TpQNh5uQ&sig2=J1UFyvjzrTBXYlpIINhbVQ&bvm=bv.1355534169,d.d2k




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.

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.

8 See Appendix 1



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 Feenberg12 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 we call agency in this domain citizenship. Citizen agency is the legitimate right and power to influence political events.”14

9 LTCAS (2008) “Gaun Yersel: Self-Management Strategy”, LTCAS and the Scottish Government, Glasgow, p8 10 ILiS (2009) “The Essential Guide to Independent Living” p211 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)14 ibid p 1-2 (accessed 22/12/2012)


http://www.sfu.ca/~andrewf/copen5-1.pdf

http://oxforddictionaries.com/definition/english/agency


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 – self-rule – is the legacy of classical and modern republicanism; the other – self-protection – 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 as exercising power over extrinsic matters, one’s agency can also have power exercised over intrinsic or psychological matters. As Steve Smith19 says:

15 Professor of Politics at the University of Toronto16 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 pp45-4717 See Sandel, M (2009) “Justice: What’s the right thing to do?”, Penguin, London18 See http://plato.stanford.edu/entries/citizenship/ (accessed 21/12/2012)19 Professor of Political Philosophy and Social Policy at The University of Wales, Newport


http://plato.stanford.edu/entries/citizenship/


“… 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 Birkenbach21 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.

Table 1: Models, components and conceptual meanings of ‘disability’ (as described by Bickenbach 2012)23

Model of disability Components of the model Conceptual meaning of ‘disability’Nagi(1965, 1969, 1977, 1991)

Pathology Impairment

Pattern of behaviour that evolves in situations of long term or continued

20 Smith, S. R (2011) “Equality and diversity: Value incommensurability and the politics of recognition”, Policy Press, Bristol, p12321 Professor and Queen’s Research Chair of Philosophy of Law and Disability Studies at Queens University, Canada22 Professor of Philosophy of Healthcare and Disability at the University of Wales Swansea23 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



Functional limitations Disability

impairments that are associated with functional limitations

Social(UPIAS 1976; Oliver 1990, 1992, 1996)

Impairment Disability

Limit or loss of opportunities to take part in community life because of physical and social barriers

Verbrugge and Jette (1993) Pathology/disease Impairment Functioning limitation Disability

Disability is experiencing difficulty doing something in any domain of life due to a health or physical problem

Institute of Medicine (Pope and Tarlov 1991; Brand and Pope 1997: Field and Jette 2009)

Pathology Impairment Functional limitation Disability

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

ICIDH – 1(WHO 1993)

Impairment Disability Handicap

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

ICIDH – 2(WHO 1997)

Body function and structure (impairment)

Activity (Activity limitation)

Participation (Participation restriction)

Contextual factors: environment and personal

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

Quebec (DPC)(Fougeyrollas 1989, 1995; Fougayrollas et al 1998)

Risk factors Personal factors

- Organic systems: integrity / impairment

- Capabilities: ability / disability

Environmental factors- Facilitator / obstacle- Life habits

Social participation / handicap

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.’

ICF(WHO 2001)

Body function and structure (impairment)

Activity (Activity limitation)

Participation (Participation limitation)

Contextual factors: environment and personal

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)

Table 2: Other models, components and conceptual meanings of ‘disability’ (as described by Edwards 24, but reconfigured along the lines of Birkenbach25

Model of disability Components of the model Conceptual meaning of ‘disability’John Harris in J. of Medical Ethics Conditions … Disability (is) a physical or 24 Edwards, S D (2005) “Disability: Definitions, value and identity”, Radcliffe, Abingdon, Oxon25 Birkenbach op cit p54



2000, 26, pp. 95-100 Disability Harm

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.

L Nordenfelt (1993: 22) “On the notions of disability and handicap” Social Welfare, 2: 17-24

Disability Non-ability Handicap Goals 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 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.

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, London27 A French philosopher who thought that the body, or person, developed principally by and through external factors28 Hughes (2005) op cit p83



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 self-directed 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 some of the others’ concerns. For example, whilst John Harris32 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’

29 UPIAS (1976) “The Union of the Physically Impaired Against Segregation and The Disability ALLIANCE discuss Fundamental Principles of Disability”, p330 UPIAS, op cit p1 and p14 (accessed 28/12/2010)31 UPIAS ibid, p1432 Professor of Bio-ethics at Manchester University



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. I can think of other characteristics which define the bifurcation.

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

Table 3: Key distinctions between the paradigms of disability followed by the two camps within disability activism, as detailed by Hughes35

Social model stalwarts Biological citizensSocial model (Disabled People’s Movement DPM). Domain or field of activity is politics. Focus is on

Medical Model (Condition based interest groups): Domain or field of activity is health care. Focus is to

33 Hughes B (2012) op cit pp2-434 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 pp15-2935 Hughes (2012) op cit pp2-4



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

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 dismantling of disablist forms of social organisation.

Focus on the amelioration of bodily deficit.

Somatophobic36, collectivist approach to disability issues. Not interested in the body

Centred on somatic individuality and thecorrection of vital deficits

Basis of solidarity, community, association and collective action is (consciousness of) the commonexperience of social oppression and exclusion amongst disabled people

Basis of solidarity, community, association and collective action is biological similarity and commondiagnostic label; hence the possible epithet ‘biosocial groups’

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.

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

Social modelists have formed a movement of emancipation embodying self-identity with the Disabled People’s Movement

Biological citizens form condition based movements embodying self-identification with a particular disease

Social epistemology, understanding disability in terms of social disadvantage and purporting the irrelevance of medical knowledge, treatment and cure: TheDPM also values the experiential knowledge of disabled people

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

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’

Pro genetics and genomics arguing for genetic research: Genetic technologies will bring tangible health benefits that will help people with currently incurable medical conditions

Anti- medicine: medicine is the enemy, a reactionary force: Social model stalwarts challenge the social basis of their ‘pathological’ status treating their bodiesas sources of pride

Pro-medicine: medicine is a partner and the source of progress. Biological citizens embrace their pathological status but seek remediation towards itsextirpation by way of medical and genetic technologies

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.

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’

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 betweeneugenics and the new genetics, emphasising the continuity between the latter and the former:

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

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.

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.

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 36 Fear of matters relating to body



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

Gloria Jean Watkins41, better known by her pen name, ‘bell hooks’ (without any capital letters) is quoted as saying:

37 Staff Tutor in Sociology at the Open University38 Woodward, K (1997) “Identity and Difference”, Routledge / Open University, p2439 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 – 72.41 Distinguished Professor of Appalachian Studies, at the Loyal Jones Appalachian Center, Berea College, Lexington, Kentucky


http://dx.doi.org/10.1080/09687599.2012.753184


“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 Frank47 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 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:

42 Quoted in Shakespeare, T, Gillespie-Sells, K and Davies, D (1996) “Sexual politics of disability: untold stories” Cassel, London and New York43 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 University45 Professor of Sociology at Warwick University46 Bendelow, G &Williams, S (1995) “Transcending the dualism: towards a sociology of pain” Sociology of Health and Illness, vol 17 p15647 Professor of Sociology at the University of Calgary48Frank, A.W. (1995) “The wounded storyteller: body, illness, and ethics” University of Chicago Press, Chicago 49 Professor of Disability Studies, the University of Glasgow


http://oxforddictionaries.com/definition/english/ethnology?q=ethnology


“… 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 non-accommodating society. 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

50 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 pp43-4451 Op cit52 See Elder-Woodward (2005) op cit



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 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

53 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, pp325-34054 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 Society57 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


http://www.ilis.co.uk/independent-living-policy/boxed-in-debate

http://dx.doi.org/10.1080/02650533.2011.623771


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. Recognise the context2. Adapt to emerging needs3. Start with rights …4. … and apply personalisation with a purpose5. Decide what kind of prevention we seek6. Balance generic and specific approaches7. Create a system of well-being, not just better social care services8. Use money for change9. Involve people for change10. Shape governance for change11. Improve the improvement cycle12. Collaborate across all long-term conditions

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


the role of agency within the discourse between the sociologies … role of agency (hasca).… ·...

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