Secondary Reading - Activism/ Pressure Groups

Question 1

Wood, The Politics of Patients’ Associations in Britain and America (2000)

Answer 1

xiii) struggled to find any academic literature focusing on the politics of patients’ associations
xv) Overall the potential political resources available to patients’ associations tend neither to be positively acquired by (xvi) them nor to be effectively mobilized. Patients and their associations remain largely outside the health policy-making processes, as grateful recipients of care rather than as political partners in the shaping of that care. There are exceptions, but most activity studied here suggests that, politically, this is a world of sleeping giants who cld become central players if wakened
4) usual explanation for weak influence offered in health studies literature focuses on dependency. Patients live in shadow of docs’ professional power and autonomy, with culture of ‘doctor knows best’ resting on the apparent scientific basis and complexity of modern medicine. Patients are largely passive consumers

General works on pressure groups rarely mention patients’ associations e.g. Baggott
5) patients’ associations as pressure groups remain a largely hidden species.

Fragmentation in representation of patients’ interests

Alford - patients = ‘repressed’ interest

6) alternative theories of power in health care have centred not on patients but on the rise of new stakeholders in the 1980s and 90s, e.g. government, NHS general managers and quasi-market systems in Britain

Almost total neglect of the politics of patients, based on conventional assumptions about their unimportance - three lits, structuralist views of state, pressure groups, hlth systems

8) patients’ associations are hybrid, simultaneously advocating or promoting a cause as well as representing the self-interests of most of their members
9) the 500 or so Br and US assocs studied are all patient-led groups which relate to specific medical or clinical conditions

11) Devel of patients’ assocs might be seen as representing new challenge to the established hlth care interests. Can be threat or benefit to them.
Philanthropic image overlaying a political capacity. Surprisingly, few of them take advantage of this situation of tacit public support to overtly pressurize doctors and managers

12) effectiveness is hugely variable. Growth is the norm

13) normal public image of patients’ assocs is one of philanthropy - caring and self-help at its best.
Different image in the eyes of hlth care policy makers - viewed w some suspicion, as being partial organizations interested only in detailed aspects of hlth care which affect ‘their’ members

Strong culture of autonomy and separateness - ‘turfism’. Competition between associations

14) rarely are the specific associations relating to partic diseases given much legitimacy as representing voices of patients. Hlth authorities are more inclined to rely on official proxies for the community e.g. CHCs, public opinion surveys, management consultancies, etc. This may be beginning to change

15) evd of some political effectiveness in a small num of specific cases - AIDS groups have maintained pressure on govts to allocate priority to research. Breast cancer groups have fought for better screening systems.
Concerns of assocs for the mentally ill about patients’ rights and standards of community care services have affected public policy and service provision.
Even in these cases responsibility for change cannot be allocated with complete certainty: there are too many variables, too many actors in the change process

Fraud.
Colonization

17) volunteerism focus of patients’ assocs in Britain; corporate, business model of US patients’ assocs
18) more interest in collaboration between assocs in Britain than the US, but cultural change still needed if voices of patients, as represented by individual specialist associations or umbrella coalitions, are to be heard in the policy making arena
20) issues with quantitative analysis
21) focus on organizations which rep specific illnesses

22) focus on personal hlth care of individuals
23) focus on patients’ associations
24) use of US encyclopedia of associations and British directory of associations

28) successes of AIDS activist groups.
But even here, perception in early yrs that negative image can result from the attachment of the label ‘political’

29) politics centres on power and influcence
Three groups of political resources:
1. tangible - votes, money, expertise, public contacts with policy makers, involvement in delivery of health care services
2. behavioural - style of leadership, lobbying strategies and tactics, covert contacts
3. images and beliefs - policy makers’ perceptions of the world of patients’ voices. Are associations senn as ‘representative’ or ‘helpful’ or ‘reasonable’?

30) most associations claim to be non-political (though all actually are political)

31) qualitative analysis of the politics of disease-related patients’ associations centres on signs of two attributes in the materials examined: extent to which an association is in possession of the three types of political resources, and the strength of evd that an association’s activities may have affected services or attitudes.
Those in authority in any hlth care system are by nature unlikely to assign the credit for change to outside bodies

35) patients’ assocs rarely die of natural causes - tend to cling tenaciously to life

36) few assocs date from before 1960, and the majority of patients’ associations date from no earlier than 1980 in Britain and US
37) disease-related patients’ associations don’t represent classic example of ‘new social movement’ - lack several of the criteria usually expected in the lit on such movements (Dalton and Kuechler 1990)

Three trends can account for rise in patients’ assocs:

1. rise of market-oriented consumer society, culture aided and abetted by successive govts’ espousal of public choice theory as basis for public policy making
2. discovery and increasing public awareness of a raft of ‘new’ illnesses
   38) 3. Charities in general grew rapidly in number

41) Limiting factor of competition instead of cooperation
43) overwhelming majority of associations relate to chronic illnesses and physical and mental handicaps

47) externally, a business-like approach is essential to the creation and maintenance of a positive image - a key political resource. e.g. organisation that cannot communicate cannot expect to influence the recipients of its message.
Significance of logos and mottos

48) British obsession with class and social status - honourary and unpaid posts are created to attach names and endorsements of well connected ppl to the charity. Royals, politicians and religious leaders = key sources of honourary officers in Britain
50) many of the patients’ assocs in this survey are not organized on basis of membership - no subscriptions, no expectations about money, no procedures for voting or regular participation
55) growth of many associations

56) official aims and objectives of most patients’ associations to a large extent (57) reflects the laws about receipt of charity status and the attendant tax breaks. Almost all seek this status - offers label of respectability and tax rebate on donated funds. Two immediate consequences of widespread charity status:
1. sameness in patient association literature and activities. Phrases such as ‘promoting the relief of suffering’ remain quite commonplace in Britain, yet are dated linguistically - older terminology reflects the wording of early legislation on charities.
Most assocs include provision of advice, support, information and education at top of stated objectives, oft followed by promotion of research through fund-raising. Only lower in the list are phrases such as raising public awareness and v occasionally, campaigning

58-9), telephones etc as social innovation - using communications tech to create new social networks

59) some work to change govt policy, with mixed results
Stroke Assoc petition

60) some assocs have many staff mems
61) most British assocs are far smaller employers than US

62) UK, clear govt policy of providing public funds to encourage fledgling assocs to mature from being home-based and all-volunteer organizations towards salaried professional, office-based management

enormous variations between assocs’ finances

65) in aggregate, patients’ assocs are economically significant
Lottery taking money which wld go to charities

67) but then Lottery funds following approach of DoH grants - awards for 3 yrs to specific projects

68) a few organizations are predominantly campaigning organizations
Most share attributes of (70) enthusiasm, selfless commitment, drive and energy, determination to triumph over adversity

Financial irregularities - rare instances of fraud

72) high-cost charities
77) MS Society reorganized to reflect the financial pressures of the mid-1990s

78) professional colonization - getting balance between working with or for hlth professionals.
In most cases, insider status = beneficial: ability to influence provision and resource allocation has long been recognised as important attribute of the most successful pressure groups (Baggott 18-20)
79) Patients traditionally seen as fairly powerless customers, weak in the face of professionalism and mystique of the medical profession, and of management interests.
Danger that too close a relationship will result in the association becoming subservient tot eh interests of the providers of care.
Three groups of interests with incentive to ‘colonize’ associations:
1. medical profession
2. suppliers of hlth technology
3. corporate players and providers of hlth care

81) there remains some evd of a closeness of relationships between doctors and associations which does raise questions about the autonomy of certain organizations in this study
83) dependence on drug company finances, which can become excessive

86) Turfism
87) Coordination initiatives in Britain have had emph on policy goals rather than administrative efficiency
Competition between similar charities but each w diff ethos

90) excessive competition for funds, support from experts, market niche all give rise to activities which need to be scrutinized to ensure cost-effectiveness
92) self-help and support activities must be interpreted as political if only because one outcome is the transmission of awareness of good practice, leading to increased expectations and demands of patients and carers

93) tangible resources give bargaining power.
Deploying votes = risky in terms of maintaining non-partisan image and legal status as charity.
Some hlth charities e.g. HIV/AIDS groups do venture into lobbying activities during election campaigns

94) Key political resource which many assocs wld dearly like to possess = access to payers and providers.
Assocs have some but not many tangible political resources.
Most of them lack two available to interest groups in other policy areas - control over jobs and the information of others (Polsby). There are exceptions, almost always amongst the few sizeable patients’ assocs.
Some participate in professional training/ education. A few, particularly in Britain in the area of mental illness, have expertise which has led them to be co-opted on to government (95) policy review taskforces

Behavioural resources e.g. social status. Cultivating social acceptance and thus political legitimacy through the recruitment of well known people.
Also, assocs seek to establish their credentials as expert bodies w consequent legitimate stake in hlth policy formulation.
Also seek right to exercise representation of a minority
Strategic and tactical decisions e.g. how to interface with hlth care payers, providers and policy makers, how to market products e.g. newsletters and conferences, and how to relate to the media, including the hlth trade press (proactively or reactively, for example)
Most telling behavioural political resources are simple - time, energy and focus.
Specialist patients’ assocs can concentrate on a signle issue.
Must deploy these resources sensitively and sparingly to avoid creating a counter-productive boredom threshold amongst those targeted

Third type of political resource - image.
From this stems ‘legitimacy’, which enhances prospects of exerting influences.
Contradiction immediately apparent between beliefs of the general public and those of policy makers.
96) appeal to general public, allowing amassing of support and funds.
Any public petitions they sponsor will be signed and their collecting boxes filled because of this belief in their legitimacy.
Policy makers tend to view assocs more sceptically.
1994-6 study of British user groups in fields of mental hlth and physical disability found hlth managers ostensibly overwhelmingly in favour of user involvement in general, but this was tempered by criticisms of the groups’ including doubts about their management skills as well as about their representativeness and legitimacy (Harrison and Mort, 1998). They were seen by doctors and managers interviewed as neither representative of society at large, nor of all users, and their concerns were influential only when it suited management in internal policy debates - a tactic styled ‘playing the user card’ (Harrison et al. 1997). Often their agendas conflicted with the wider public and patient interest which the respondent managers and doctors claimed themselves to represent

Debate over beta-interferon

(97) potential is there but mostly this is no more than potential and, because beliefs are so central to policy makers’ behaviour, assocs have to work hard to mobilize their resources and exert influence at the collective lvls of hlth policy making

Indirect influence at the micro lvl dominates the political activity of the majority of disease-related patients’ assocs in both Britain and America.
Operates through combination of patient education and public awareness policies
Newsletters, leaflets.
Assocs sing the praises of exemplars of ‘good practice’
Changes nature of the individual doctor/ patient relationship.
Can alter provider and payer attitudes towards a condition as increasing numbers of professionals are faced with requests for reported ‘best practice’ treatments

e.g. MS Society push in late 1990s to get beta-interferon prescribed more widely included a patient information strategy which helped pressurize NHS policy makers to develop clinical protocols as advice to doctors.

Decade earlier, American AIDS groups had encouraged individual patient protest as part of campaign to get AZT licensed

98) Conscious attempt to ‘educate’ health professionals
100) influencing intermediate lvl - hospital, provider, insurer, hlth board, state govt
103) associations in the mental hlth field are politically overtly active

105) macropolitics: political campaigning at the national lvl
targeting govt
US HIV/AIDS assocs and AZT licensing

106) drug approval and research funding are common concerns in Britain
in these instances, campaigning is typically quiet (107) and semi-private.
Within Parliament several all-party groups (Often of both MPs and Lords) with specialized interests provide the setting for low-key publicity, and facilitate access to the real policy makers

Campaigning = a term used v variably. From working w govt in campaigns targeting public, to open polit pressure attacking govt policy
Stroke Assoc petition to PM Oct 1997
Centre of the continuum is occupied far more than the ends.
Hlth politics largely played out in a (108) dignified way, not exactly in private but away from the mass media.
Hlth trade press might well be involved, but not the tabloids or television.
Exceptions arise, especially when life-threatening conditions are linked to ethical and moral considerations (e.g. AZT and mass media interest in the US).
Assocs are cautious about publicly challenging the bi-partisan NHS political culture of cost containment

With just a handful of exceptions, the overall picture is one of the failure of disease-related patients’ associations to work together to increase ability to influence policy makers.
Turfism severely inhibits political role

111) political success of collaboration in Britain in the form of the Long-term Medical Conditions Alliance. Beginning to experience political success in terms of obtaining legitimacy in the eyes of NHS policy makers and consequently of access and ‘insider status’.
Success of LMCA strategy - focusing on the case for patients’ voices to be heard within the NHS - subject which both unites associations and reflects the 1990s policy of successive governments. The strategy has been to demonstrate that patients’ associations are v good patients’ voices - more so than either general public or CHCs.
112) Well established tradition of voluntary organizations working on a collaborative basis in Britain

113) little intermediate-lvl activity in Britain
Hlth charities in this study possess potentially significant political resources, including knowledge and expertise about the diseases which they represent, money for distribution to hlth researchers and often great energy and commitment.
That they do not always choose to deploy these to influence hlth care and hlth policy partly reflects conscious decisions to remain non-political.
Also bc of politically hazardous complex double-image which assocs enjoy - philanthropic to some, narrowly self-intersted to others; and the fragmentation of authority and hlth institutions which they perceive, and a ack of political expertise. Oft reference made to wish lists and apparent absence of clear strategies or tactics for translating patients’ associations’ demands into public policy.

With quasi-market reforms of the 1990s making increasing geographical inequities more explicit, there is fertile ground on which patients’ assocs might act to exert influence, though mostly they choose not to do so.

In neither country are patients’ assocs offering a strong (114) political challenge to established interests. Their influence is at best marginal overall, and significant in only a handful of instances.
Their v existence has a quite impact at the lvl of the individual patient/ professional interface, and their investment in medical research can lead to new treatment and care regimes.
This type of activity and influence is not the usual focus of studies of pressure group politics.
Politics of presence rather than of pressure.
Slow changes to values and expectations may lack the excitement of public campaigns, but they most certainly indicate influence

146) office-based chapters well established in St Louis.
Office gives an assoc the appearance of strength. Symbolizes established activity and authoritative existence
147) Turfism = basis of American philanthropic culture

148) In Britain, local brances of patients’ assocs are predominantly all-volunteer, home-based organizations
159) In Manchester, branch level activity in the area of professional education and training is almost non-existent

167) Difficult in branch setting of maintaining momentum long-term, without management support from above. Most activities necessarily small-scale in nature, despite high lvls of commitment.
There is ambivalence towards behaving politically to influence hlth care, with a tendency to adopt the role of subservient ‘grateful patients’

171) political scientists began in 1970s and 80s to be intersted in the politics of hlth
Not until 1989 that a specialist Politics of Hlth Group was established within the Political Studies professional assoc in Britain.
Yet our lit search reported an almost total neglect of (172) the politics of patients in the main texts on both hlth studies and pressure groups

Peterson, Harvard 1993 - citizenry more educated, attuned to politics, was beginning to permeate hlth politics

MIND has over 220 local branches and the extent of MIND’s status of ‘public legitimacy’ is evidenced by its membership in 1997-9 of the govt’s advisory comte reviewing mental hlth policy, law and services

Associations here viewed as new species of (173) pressure group.
Show both ‘cause’ and ‘interest’ characteristics - hybrid category.
Only Alderman gives serious discussion to the potential existence of ‘hybrid’ category
hybridity reflected in legal basis as charities

174) despite claims to the contrary, patients’ assocs are self-evidently political associations

Alford - dominant vs challengers (managerial)
(175) patients’ assocs as new challangers?
Quasi-market reforms appeared to place heavy emph on the role and status of patients and consumers, through rhetoric of choice and consumer rights policies beginning with the Citizen’s Charter and Patient’s Charter tariff of entitlements
Labour govt after May 1997 sang to remarkably similar tune.

Misleading and unduly optimistic to pretend that there has been strong evd in earlier chapters here that patients’ assocs in either Britain and America really look like embryonic ‘new challengers’ to the established interests of doctors, hlth professionals and above all, mainstream hlth providers and senior managers.
In particular, insular mind-set which was found to dominate the world of patients’ associations makes it hard to envisage effective ongoing political alliances (176) and campaigns to alter the mind-sets of policy makers.

This was a study of the failure of associations to mobilize the considerable quanitity of latent political resources which they either possess almost naturally or have chosen not to effectively acquire and mobilize.
Potential for coalition activity, but has so far led to little in the way of alliance-building

1990s saw further emergence of the contract state - increasingly using the ‘third sector’ of voluntary, non-profit and other non-governmental organizations to implement public policy through a process of ‘bidding’ for funds. Thus (177) several British assocs had successfully bid for NHS funds and in a sense had moved partly into being providers of NHS services rather than purely advocacy organizations.

Contrasting responses to impact of contract state - some said signif difference, some said none

178) varied rate and extent of local branch development

Attitude of state towards patients’ assocs = critical to chances of being politically effective.
State/ charity relationship of mutual interdependence, with the latter moving later from being senior to junior partner

Oft ambivalent state attitude towards patients’ assocs

181) States receive significant financial and manpower support from patients’ assocs

For some patients’ assocs, the key relationship with the state has centred on the basic campaign for disease recognition which lay behind their original foundation, and their successes again reflect enormous political influence.
E.g. acceptance of CFS
This has far greater financial impact on social security entitlements to pensions and disability benefits than it does on hc costs

Other assocs have concentrated on lvl of state ‘investment’ in disease eradication

182) Ware’s list of criteria to test assocs’ contribution to democracy
185) Putnam - concern at loss of social capital - decline of community. Modern media e.g. TV - negative effect. (186) published corrected figures yr later but still claimed advent of TV negative effect on civic engagement

Patients’ assocs meet most of Ware’s criteria for contributions to democracy.
187) good deal of the competition was more about campaigning for orthodox medicine to recognize and accept certain diseases than it was about treatment regimes.
In short, orthodox med has such a strong hold in both countries that serious debate between it and complementary therapies or othe ralternative hlth care regimes was not convincingly unearthed through this study of patients’ assocs: hence the extent of diversity of opinions represented by patients’ assocs is limited by their choosin to act within the boundaries of orthodox (or allopathic) medicine (ACT = EXAMPLE DIRECTLY CONTRADICTING THIS TREND)

187) Measuring effectiveness is always tricky.
Concept - effective organization is the one which meets its objectives at reasonable cost

188) some assocs = high cost. Desirability of published indicators about financial performance

189) case to be made for indicators on political performance, but this wld be much more difficult.
E.g. mental hlth, where researchers and policy makers generally accept that patients’ assocs have been influential. Few wld offer as an example of this any particular public policy pronouncement or legislative or budgetary initiative. Rather, kept services high on polit hlth agenda.
One indicator cld be extent to which govt uses the assoc to man its network of advisory bodies.
Other polit indicators cld include involvement in polit coalitions and alliances, activities relating to parliament and congress, and expenditures of staff time and of money on overt campaigning

Other Indicator cld relate to internal institutional performance - data about role of the board, etc

Importance of possessing an active board is such that several assocs openly admitted that recruiting ‘good’ board mems (190) was problematic

World of patients’ assocs = fast-moving, and hard to chart accurately at any moment in time

191) can only end by saying ‘thank you very much indeed, and keep up the good work that you are doing.’

Question 2

Works to follow up from Wood

Answer 2

Baggott
Alderman
Alford
Kendall and Knapp
Chris Ham
Stewart - interest vs cause groups
Moran - preference vs functional groups
Allison
Ware

Question 3

Lerner, B., The Breast Cancer Wars: Hope, Fear, and the Pursuit of a Cure in Twentieth-Century America (2001)

Answer 3

xi) 1977, mother diagnosed w breast cancer. Mother survived.
Medical student in 1980s

xii) difficulty of writing historical research on a controversial area
4) Radical mastectomy by early 1970s had become touchstone for dissatisfaction w patriarchal and authoritarian medical system

Breast cancer = leading cancer killer among women

5) disease cannot be understood outside its social and cultural context
7) role for great person hist, but must place personal accomplishments in proper historical context

8) role of military language and metaphor. Can data ever be neutral during a war?
This book focuses exclusively on the experiences (9) of female cancer patients

more recent work in feminist history has warned of perils of analyses that portray women and women patients solely as passive victims
Apple and Morantz-Sanchez - women encountering diseases have been both actors and reactors

10) growing decision-making power of women with breast cancer, 1970s
41) physician-led initiatives, dubbed ‘wars’ for dramatic effect, aimed to convince women to participate in early screening, pre- and post-war period
43) Congress attempting to dispel fatalism

American Society for the Control of Cancer (ASCC) - efforts to ‘fight cancer with publicity’. Many benefactors = relatives of ppl dying of cancer
However, organisation = doctor-dominated in interwar period

Silence and stigma surrounding cancer

formation of ‘Women’s field army’ by the ASCC, 1936

47) hundreds of thousands of American women joined the WFA in 1930s and 40s, but difficult to prove they changed their behaviour as a result
60) women criticised by physicians for failing to take early detection seriously enough
64) criticism of early and aggressive treatment from within the profession - Crile. Tactic to appeal to the physicians through the public
93) Geoffrey Keynes first argued against routine radical mastectomy in the 1930s
127) Beginning in the 1970s, breast cancer patients wld decry the premise that physicians had the right to deem certain procedures of acceptable or unacceptable risk
128) debate over Randomised Controlled Trials in the 1960s remained confined to medical meetings and journals

141) Breast cancer patients revolt.
New York journalist Rosmond published in McCall’s magazine, Feb 1972, an account of her experiences as a breast cancer patient. Described decision to have lumpectomy instead of more extensive operation.

Broader revolt in US society in the 1970s against figures and institutions of authority

condescending and paternalistic male med professionals

142) sea change in medical decision-making that women such as Babette Rosmond helped to effect

143) 1954, breast cancer patient Lasser founded Reach to Recovery, organization dedicated to providing hospitalized radical mastectomy patients with the type of information she had sought.
Certain surgeons reacted angrily to Lasser’s program, seeing Reach volunteers as outsiders who were interfering with the doctor-patient relationship

144) as Reach to Recovery expanded and became more mainstream, physicians and nurses also turned their attention to the psychological effects of breast cancer
146) Beginning in 1970, breast cancer and debates over radical surgery became a frequent subject in women’s magazines, newspapers, television

148) Locke relying on male physician, Cope, convinced of futility of radical breast surgery. Women’s magazines contacted Locke, seeking to reprint the article. Vogue interested - reprinted a piece in Nov 1970.
One piece, published by Woman’s Day in Oct 1970, generated 7000 letters

149) Scientific controversies go public when debates about knowledge become debates about values.
By demonstrating how surgeons arrived at treatment decisions, Cope argued to his readers that docs’ personal preferences - as opposed to scientific knowledge - appeared to be guiding the management of breast cancer.

Challengeing of traditional assumptions about breast cancer mirrored other changes occurring in US society at the time.
Authority was being questioned by civil rights workers.
In justifying decision to print Cope’s article, Locke approvingly cited how the civil rights movement had similarly encouraged public airing of a controversial topic

150) Questioning of breast cancer physicians’ authority drew most directly from the rising feminist movement

Early 1970s - tangible women’s health movement

151) more women began to write about experiences.
Women grappling with breast cancer oft drew on informal ‘female networks’ to learn more about diagnosis and treatment of the disease.
New narratives = ‘acts of daring’

156) Frankfort challenged male domination of medicine by encouraging physicians to include their patients in decision-making.
‘Right to choose’ theme

157) in England, Campbell rejected notion of one-step procedure leading to radical mastectomy. Chose to undergo lumpectomy and radiation therapy at Guy’s Hospital and actively publicised this option before her death from breast cancer in 1981

158) fights over radical mastectomy were the loudest in the US
Ms. magazine - patient’s bill of rights

Rosmond’s article in McCall generated thousands of letters.
Many asked for info, especially name of her doc.
80% letters favourable
159) letters criticising docs’ behaviour/ current practice. Also mentioned radical mastectomy side-effects.

161) Rosmond offended many by urging patients to question their physicians.
Radical mastect remained procedure of choice early 1970s

162) surgeons’ persistent faith in surgery
164) hierarchical nature of surgical profession also promoted conformity

168) moderate voices oft went unheard

169) when women came to surgeons’ offices questioning radical mastectomy, directly challenged the tremendous professional authority that the med profession had long taken as a given.
Mid-1970s - battle lines had begun to blur. Images of women as either angry rebels or victims of imperious breast surgeons proved too simplistic

170) 1974 = turning point for breast cancer awareness in the US - both Betty Ford and Happy Rockefeller were diagnosed with breast cancer and made public their experiences

Shirley Temple Black = first famous breast cancer patient.
171) Black as patient activist. More conciliatory attitude towards physicians. Published account of illness + treatment in McCall’s 1973. Received over 50,000 pieces of mail.

173) Women responded to Ford’s diagnosis by flocking to physicians and radiologists to have breast examination and mammography

175) Rose Kushner, pre-medical student late 1940s. Freelance writer
177) Able to convince family surgeon to perform only a biopsy
178) Why most surgeons still doing Halsted radical when modified radical is just as good?

180) Using techniques that AIDS activists would employ in succeeding decades, she learned the literature and then aggressively challenged the knowledge of med professionals.
Late 1970s, Kushner was only the payroll of the National Cancer Institute, reviewing grant applications and revising literature written by cancer specialists.
Kushner challenged doctors at talks and conferences
Despite willingness to criticize, Kushner actively sought to build bridges with opponents

183) Betty Rollin, First, You Cry:
184) In confessing concern about her looks in the face of potentially deadly breast cancer, Rollin rejected approach of other women who stated only life matters
185) What most resonated with Rollin’s readers was contention that women approaching and recovering from breast cancer surgery should be allowed to think about issues of appearance

187) Woman after woman thanked Betty Ford and other celebrity cancer patients for encouraging them to have the checkups that they believed had saved their lives
188) Rosmond’s voice in the minority - most women perfectly willing to conceptualize breast cancer treatment options in terms of a life versus breast calculus in which losing a breast became a type of quid pro quo for getting to live. Such a framework fit well with American cultural norms regarding vanity, sexuality, risk-aversiona nd personal responsibility for disease
190) mixed reports of ability to return to normality after surgery

192) Breast reconstruction
Lorde - reconstruction = an atrocity

193) many argued for reconstruction e.g. Zalon
195) after 1974 breast cancer became a public topic
223) By late 1970s, US finally coming into line with Canada and Europe - Halsted radical mastectomy was on its way to obsolescence
227) Kushner, only woman and nonphysician on the NIH comte. Took her persistent pleas to get them to include a statement promoting the use of two-step operation. Originally introduced for purposes of efficiency and as a way to avoid anaesthetizing patients twice, the one-step had come to serve little purpose except to keep women silent.

Kushner by this time had become more insider than outsider. Appointed to the National Cancer Advisory Board May 1980. American Cancer society came to applaud Kushner’s efforts, presenting her with its highest award, the Gold Medal of Honour, in 1987.

228) Partnership between Kushner and Fisher (whose RCT data suggested against one-step radical mastectomy) highlighted the complex mixture of medical and social factors that eventually led to significant changes in the treatment of breast cancer in the US.

Retrospective assessments of this issue have tended to cite either scientific progress or women’s activism as having led to the abandonment of radical surgery. Kushner once stated it was the work of scientists e.g. Fisher that had caused the lessening in the extent of surgery.

Yet such descriptions minimize how developments in science and activism combined to produce acceptance of less extensive operations
Fisher - Kuhn paradigm model. Advances in science occurred when discontent among mems of the scientific community led to the reevaluation of accepted explanatory paradigms.
In agreeing with Kuhn, Fisher acknowledged how activists within and later outside the med profession induced physicians to perform better studies and then revise long-held assumptions and beliefs

229) Kushner came to embrace randomized controlled trials

231) In taking on surgeons in the middle 1970s, Kushner and other feminists sought to abolish both the radical mastectomy and the paternalist model that the med profession had used to justify this operation.
Many surgeons who finally parted ways with the Halsted radical remained unwilling to cede decision-making to their breast cancer patients

238) most revolutionary aspect of Fisher’s findings - failure to treat the axilliary lymph nodes had no effect on survival from breast cancer
258) For all of Rose Kushner’s success in publicizing issues related to breast cancer diagnosis and treatment, she tended to be a solo operator

1986, Kushner joined with others to form the National Alliance of Breast Cancer Organizations (NABCO)

259) Kushner’s death left gaping hole in the world of breast cancer activism.
Natioanl Breast Cancer Coalition (NBCC) formed 1991. Three goals: increasing research funding, increasing access to screening and treatment for all women, and increasing the role of women in hlth policy decisions - something long absent from war on breast cancer. Kushner had stressed this latter aim - especially as she came to emphasize the importance of working within the system.
In lobbying, breast cancer movement drew explicitly on aggressive grass-roots lobbying strategies (260) pioneered by AIDS activists in the mid-1980s.

Foundation of NABCO and NBCC have helped to unify the publicity and fund-raising apparatus for breast cancer in the US.
Kushner’s early advocacy has matured into a pragmatic and flexible early advocacy movement

controversial relationship with corporate America

261) Some critics argue that the breast cancer movement of the 1990s, with its lavish fundraisers and well-connected lobbyists, is largely dominated by upper-class white women voicing their own concerns about getting access to sophisticated diagnostic and therapeutic modalities.
Criticism for failure to tackle inequalities in treatment for minorities, etc

grass roots organization 1 in 9 - pushing connection of toxic waste to cancer.
Women’s groups such as this criticise the cancer establishment, e.g. arguing that investigation of possible dietry interventions that could lower incidence of breast cancer - e.g. low-fat diet - have been given short shrift by the National Cancer Institute and other funding agencies.

Philosophy of prevention rather than early detection

264) opposition to trial testing tamoxifen’s preventive capabilities - opposition increasing in March 1994 when the media reported that four women taking tamoxifen as part of earlier NSABP treatment study had died of uterine cancer.
Negative publicity/ criticism delayed the trial.
Women’s groups criticising - emph on toxic substance and med control went against their focus on lifestyle change and autonomy

Debates over tamoxifen trial created major rift between Fisher and mems of the advocacy community - he had no tolerance for what he saw as unwarranted outside interference in the scientific enterprise

265) scandal emerging March 1994 due to reporting of Chicago Tribune, revealing a Canadian researcher had falsified records
266) Fisher publication of P-01 trial results Sept 1998 showing preventive effects of tamoxifen, at some cost in terms of toxicity. Many women’s groups criticised - quick fix taking place of more important lifestyle changes, etc

Leopold - prevailing biases in the research agenda reflect the influence of powerful interest groups in society.
That is, breast cancer activists who attempt to (267) raise awareness and funding are unqittingly supporting the industries, drug companies and research enterprises that preclude a true evaluation of breast cancer as a political issue

Some such as Willett argue that in contrast to tamoxifen, alterations in diet have never been proven to reduce incidence of breast cancer
Popularity of tamoxifen in US - daily preventive pill is compelling notion in ‘magic bullet’-seeking culture.
As critics continue to contend, chemical prevention of cancer (268) may prove mixed blessing - further deflecting attention from the more basic social and environmental problems that may predispose women to breast cancer in the first place

271) Matuschka - 1993, picture of her exposed mastectomy scar on cover of New York Times Magazine. Converted a sexual and private body part into a symbol of power
274) over past decade, growing numbers of women with breast cancer have written accounts of their illness which depart from traditional narrative structure, describing the chaos of diagnosis and treatment

280-1), critics of genetic testing

296) should recall the basic tension that has characterized previous breast cancer wars - ‘extra’ treatment may provide minimal or no advantages.

Rather than feeling compelled to reach decisions as objectively ‘right’, women should choose what is right for themselves

Question 4

Lerner - secondary works to follow up

Answer 4

Apple
Morantz-Sanchez

Ellen Leopold

Question 5

Crossley, N, Making sense of social movements (2002)

Answer 5

1) this book = about how we can make sense of social movements sociologically
3) Blumer - Social movements can be viewed as collective enterprises seeking to establish a new order of life. They have their inception in a condition of unrest, and derive their motive power on one hand from dissatisfaction with the current form of life, and on the other hand, from wishes and hopes for a new system of living. The career of a social movement depicts the emergence of a new order of life
4) Eyerman and Jamison 1991, Social movements are… best conceived of as temporary public spaces, movements of collective creation that provide societies with ideas, identities, and even ideals

Tarrow 1998, Contentious politics occurs when ordinary ppl, oft in league with more influential citizens, join forces in confrontation with elites, authorities and opponents… When backed by dense social networks and galvanised by culturally resonant, action-oriented symbols, contentious politics leads to sustained interaction with opponents. The result is the social movement

6) Della Porta and Diani - importance of acts of protest

8) mental health movements.
Movements are important because they are key agents for bringing about change within societies

11) collective behaviour approach:
- portrays movement emergence as a reflex response to ‘grievances’, ‘structural strains’ or other such forms of hardship
- portrays protests and movements triggered by these hardships as irrational psychological responses; manifestations of ‘mob psychology’ and collective hysteria

12) resource mobilization approach:
- Rational actors will tend to act when the opportunities for doing so effectively are greatest

13) Criticisms of RAT - rational actor theory - model
28) Blumer - as a social movement develops, it takes on the character of a society

30) importance of agitation. Agitators raise expectations or alter them, thereby knocking them out of line with the status quo and generating a strain which, in its turn, is the impetus for movement formation.
Agitators give shape and direction to aroused feelings, channelling them in the direction of protest and movement formation.
31) Formation of solidarity, esprit de corps. Formation of culture/ identity
32) Formation of morale and also group ideology. The latter contains rhetorical tools of attack and defence which will mediate interactions with outsiders and outside ideas and objections.
Development of tactics

33) mechanisms of movement formation are simultaneously rational and emotional, cognitive and embodied

35) for Blumer, strain is not simply a matter of objective factors in the environment of agents, but rather arises out of an interaction of such conditions with the expectations and assumptions (36) which those agents have about them; strain is a result of mismatch between expectations and reality
37) rediscovery of import of movement culture

40-1) Smelser - norms and values. Change in values requires change in norm, but not vice-versa

42) Jasper - importance of ‘moral shock’ in precipitating social movement activity in contemporary USA. Moral shock = effect generated by an experience which deviates from deeply held taken-for-granted assumptions about the world

43) Smelser’s six factors which affect both whether collective behaviour will occur and, if so, what sort of collective behaviour it will be:
1. structural conduciveness
2. structural strain
3. growth and spread of generalized belief
4. precipitating factors
5. mobilization of participants for action
6. Operation of social control

44) Smelser’s 5 basic types of collective behaviour, including norm-oriented movement and value-oriented movement
48) Crit of Smelser and his idea of collective action as a ‘short-circuit’
49) import of emotional states, and these can be ‘rational’
50) mobilization and the formation of generalized beliefs are what agents do in the process of constructing their movements and collective actions. They are not conditions which determine whether and how agent act but rather descriptions of the way in which agents act
51) import of conduciveness, strain and control

52) different sites of struggle where movements wage campaigns e.g. political system, media.
Some movements become institutionalized

53) Although a limited range of variables do, arguably, account for much movement activism, the way in which they fall into place differs across movements, and different variables have a different weight in different cases. Smelser’s value-added model is the only model in the lit which does justice to this fact
54) Smelser - one-sided focus upon the external factors which shape social movements. Blumer strong on agency, weak on structure/ external factors, and Smelser = vice-versa

56) Rational Actor Theory (RAT)
57) desire - defines goals and interests for human agents and costs and losses. Actions and their consequences are profitable and/ or costly to the extent that they bolster or drain the agent’s stock of desired ‘goods’. Desires are also structures of motivation which drive action

58) Opportunities and constraints for action within the external environment of the agent, which variously raise and lower costs and profits

Also, rationality - capacity of agents to identify course of action which would enable them to maximize the realization of their desires and weigh up relative costs and benefits of partic course of action. Rationality = strictly instrumental for RAT, not like everyday usage of term

64) major problem with RAT - any action can be explained by the claim that agents find it sufficiently satisfying or rewarding as to be motivated to engage in it, but this is ultimately unsatisfying for RAT because it takes all the steam out of their explanatory schema, reducing it to the truism that agents generally do whatever it is that they want to do
65) it is my contention that the asocial and individualistic baggage, with which RAT attaches to basic observation that social actors act purposively in pursuit of their own interests, and which constitutes the real difference between their model and that of others who propose a broadly rational or purposive conception of agency, is deeply problematic
69) RAT model ignores the rational-moral force of the arguments raised by social movement activists, since it has no means by which to address or understand such arguments. Individuals do not always act selfishly
70) RAT deprives individs of subjectivity - preferences etc, and interpretation
74) If wish to understand preferences, should attend to biographies and to those events which have seemingly shaped their preferences. Should seek to explore the history of specific preferences in general - manner in which specific types of preference have emerged and spread within our societies
77) resource moblization approach
78) rank and file bestow recognition upon leaders and leaders mobilize the rank and file with whatever ‘rewards’ this elevated position puts at their disposal

79) material and nonmaterial resources
Political mobilization much like any other branch of social life - it is motivated, coordinated and facilitated by shifts in resources

82) criticisms of RM theory based on elite model of power
90) must seek tounderstand the symbolic reality which group/ network has constructed for itself - must look to internal life of the group for rewards and punishments which steer actions of its members

We must seek to understand the ‘games’ in which mems are involved. Mems feel the games and symbolic reality within their bones

97) implication of the RM approach is not simply that movements ‘grow out of’ networks or that networks ‘foster’ movements. Movements are networks and, in the first instance, they are the very networks that they grow out of.
Movement formation is less a matter of agents coming together and more a matter of agents who are already together, transforming their network into something different. The emergence of a new movement consists in the mutation of an already existing network. Furthermore, the organizational structures of those networks will tend, in the first instance, to serve as organizational centres of the movements.

Movements, rooted in networks which resource them, produce networks which will resource them. This will oft also entail the emergence of new formal organizations which offer leadership and coordination to the movement.
The history of any movement is oft punctuated by the rise and fall of specific organizations and organizational cells within it, each new group breathing life into the movement and its struggle, directing it in a specific way, before finally dying off or burning out and leaving room for the next contender.

Complexity of networks - links between and within movement organizations

98) Much work on movements has focused upon very overt protest activities and is chiefly geared to an understanding of those moments of high tension. But movements also manifest considerable periods of latency where their overt activities and public profile are minimal

Crit of networks

101) RM would be better served if it abandoned its loose and somewhat tenuous grip on RAT and embraced a more appropriate theory of agency

103) neither resources nor networks, any more than grievances or strains, are sufficient to explain movement emergence, however necessary or important they may be.
Many well-resourced and networked groups with no grievances will not mobilize.
Resources and networks must be incorporated into a broader value-added model of movement formation

104) role of social movement organizations in meeting the political ‘demand’ created by a wider population.
In many instances RM is simply not compatible with the assumptions of RAT

105) Political process (PP) approach
107) Eisinger - protest occurs in a mixed system because the pace of change does not keep up with expectations, even though change is occurring. As the political opportunity structure becomes more open, previously powerless groups begin to acquire influence. Protest to express impatience
109) hypothesis that movement activity is affected by changes or perceived changes in opportunity structures has been explored and supported by many writers and a great body of empirical work
110) Tarrow - opportunity structures are only one factors affecting emergence and development of social movements and protest activity. Other crucial factors are networks, resources and ‘frames’
113) McAdam advocates a longer term and more processual approach to studying social movements. Mustn’t account only for emergence of movement, must be able to account for the various transformations they undergo, the dynamic of their development and ultimately their demise. He argues elements which facilitate movement development may fall into place over extended period of time and he thus warns against those approaches to movement analysis which focus only upon the immediate events surrounding mobilization.

McA’s second big contribution - recognition of the role of ‘cognitive liberation’ and ‘insurgent consciousness’ in the sparking of conflict

117) Activist biographies - McA - the shock caused by involvement and the emotional intensity of the project, combined with immersion in the resistance culture, seemingly functioned to resocialize the participants, breaking down many of the conventional habits of the American citizen and generating new and radical habits: a disposition towards and a competence in the alternative politics of social movements
119) Acts of involvement in activism committing ppl to more - getting more and more deeply involved (McA)
122) Much overlap between PP and Smelser’s value-added model
123) superiority of Smelser’s model - identifies the functional preconditions which must be met if movements/ protests are to emerge, w/o conflating those functions with concrete events/ processes, and he thereby remains open to poss that a single event may fulfil more than one function. In addition, he recognizes that, empirically, the events which fulfil these various functions may emerge in any order

crit narrow focus on political structures. Need to incorporate other crucial structures e.g. the media

probability that a movement will achieve high lvls of good publicity within the media is greatly dependent upon the media currency of ‘news value’.
About pushing the right buttons.
Media opportunity structures = variable

124) opportunity = relational, a function of the fit between the resources of agents and the state of the social space in question. Openings in the media will be more of an opportunity for those with the know-how and resources to make something of them

Marx

125) agency is also a problem within the PP approach
127) RAT model of agency has tended to dominate the PP literature

Tilly - Repertoires of contention - seeks to capture the historical peculiarity of the methods of protest that agents use. The way in which agents protest (128) reflects both their historical and national-geographical location. Cultural
Repertoires constrain behaviour and choice.
Repertoires emerge out of struggle and activities of everyday life.
Repertoires = forms of interaction

130) Social movements are themselves modern - aspects of specifically modern repertoire of contention
132) actions open to individuals depend on their resources

Goffman, framing contention.
Framing = metal level of categorization of the objects of experience, which affects the meaning which they have for agents and consequently the way in which they act towards them.
134) Has been argued framing is crucial to mobilization and sustaining of activism. The individual who reads the beggar as proof of the evils of capitalism is more likely to be mobilized into anti-capitalist actions, than the individual who sees only individual fecklessness.

135) SMOS tap into ‘sentiment pools’ by way of mobilization of resonant symbols (Snow et al.)
Snow et al., four possibilities for use of frames:
1. frame bridging. Groups or pops with strong concern for civil rights might be prompted to partake in a new civil rights campaign simply by having the issues presented to them as civil rights issues
2. frame amplification. Drawing a population’s latent sentiments and schemas into sharper relief. Thsi might involve persuading individuals that their already existing values logically require them to subscribe to a particular cause, or perhaps rekindling those values through subtle provocation
3. Frame extension. SMOs might seek to extend own basic frame to incorporate interests of their constituents. e.g. they may align themselves with popular or fashionable causes, or with culture/ practices of a particular group
(136)4. New frames planted, old frames jettisoned, erroneous beliefs or ‘misframings’ reframed

Tarrow - out of the cultural reservoir of possible symbols, movement entrepreneurs choose those that they hope will mediate amongst the cultural understandings of the groups they wish to appeal to, their own beliefs and aspirations, and their situations of struggle.
Tarrow - frames are about emotions and making sense of them. (137) channel emotions
Emotions are oft a crucial source of energy which fuels movement activism and engagement.
Processes of frame alignment must attempt to tap into those symbols which are emotionally invested if they are to be effective.
Meaning making and sentiment tapping are competitive and contentious forms of activity.
Battleground where much of this takes place is the mass media.
Tarrow - media does not represent the interests of social movements. They are ‘far from neutral bystanders… certainly do not work for social movements’
In partic, the concern for newsworthiness and news values ensures that the media seeks out the more sensational aspects of movement activity, sucha s violence and the more eccentric extremes, and this necessarily destroys the portrayal of movments.

Crossley - do not agree. Only some movements, some of the time, are disadvantaged in this way. E.g. in work on mental hlth movements, I found that the news value of what some journalists dubbed ‘mad lib’ constituted an important source of publicity for the early (and explicitly anti-capitalist) mental hlth groups, on which they were able to ‘cash in’ for increased membership and legitimacy.
Coverage for their cause generated ‘media amplification’ in which many more ppl became involved. And helped to frame their cause as a serious political agenda which could not be dismissed lightly

McCarthy - emergence of US anti-drink driving groups was sparked by tragic death of the child of one lead campaigner. But there had been equally tragic and v similar deaths prior to this which had not led to movement formation. Crucial factor in this case was the prevalence within media discourse of a ‘drunk driving’ frame which construed driving accidents in such a way as to invite moral condemnation and action for legal change.
Dominant discourse prior to this time had portrayed road deaths as tragic but unavoidable accidents, thus inciting grief but no political action

139) many accounts overlook extent to which frames may themselves constitute a stake in the struggle.
Motivated by concern with the knock-on effects of public perceptions but also involves a more basic politics of recognition

Steinberg - accounts of framing oft pay insufficient attention to (140) historical emergence of the discourses, rhetorics and meanings that mobilize movmeents and more particularly, to the dialogical and conflictual nature of their context of emergence. Frames oft written about as if they were self-contained and pre-given packages of meaning or discrete and unchanging tools of interpretation. Reality is more processual and perhaps also innovative.

Steinberg - Movement discourses are aimed at adversaries as well as supporters, challenging them to disagree with claims. Construction of discursive repertoire entails proleptic anticipation of objections and a targeted focus upon the vulnerable areas of one’s opponent’s beliefs. ‘fighting words’. These repertoires emerge gradually in the course of a conflict, constantly evolving to keep up with dialogical exchanges between activists, their constituents and their opponents

Crossley - accounts of framing can appear to separate questions of meaning and symbolism from questions of power, ignoring the central role of forms of symbolic power in the process of struggle.
Who gets to say what and to what effect is crucially affected by social structures and imbalances of power. This is particularly pertinent in relation to those contemporary struggles where activists find themselves in conflict with designated authorities on particular issues, whose voice is generally privileged. These struggles often hinge upon scientific arguments and must contend with the power of dominant paradigms or ‘regimes of truth’ (Foucault) and expert systems.
Importance of linguistic code - sometimes what ppl say can’t be separated from the way that they say it, meaning an opinion is undervalued by an audience.

Most fail to explore the deeper dynamics of persuasion.

141) Gamson - notion of framing rests upon a constructionist epistemology - suggests our perceptions and knowledge of the world are at least in part a function of active processes of construction on our own behalf and various cultural schemas and categories which we habitually and pre-reflectively or unconsciously deploy in that process. The consequence of adopting this epistemological position is that our arguments must avoid reference to a real objective world which agents have access to.
However, when discussion efficacy of partic frames, Snow et al. sometimes make ref to ‘empirical credibility’ of frames - an argument which seemingly supposes that agents have access to the world independently of any interpretative frame, such that they can compare and assess the validity of frames agaisnt it.

The process by which agents are persuaded of new frames, or aspects of them, must necessarily consist in an attempt by movement activists to connect with the interpretative schemas of their potential constituents.

Klandermans - this can have the effect that movements v often only persuade those who already share many of their sentiments and schemas.
Protest activities can have a significant effect in changing certain of the basic dispositions and schemas of a social agent, making them more available for future persuasion

Problem with how framing approach is oft use and agency.

Frames are not objects or utensils in the objective world, which agents can pick up and use like tools. They are constitutive aspects of the subjectivity of social agents which those agents cannot get behind or detach themselves from

Steinberg - agents’ constructions of reality cannot strike them as constructions, or else they would lack the accent of reality and some further definition of the ‘real’ reality would be presupposed.

To put more concretely, a feminist does not ‘frame’ male domination as unjust in an effort to win support, nor does she put on and take off her feminist identity as a coat.
This notion need not preclude the possibility that the feminist will consciously manipulate symbols and meaning in an effort to advance her cause and recruit more agents to it.
It does suggest that the schemas and dispositions which structure struggle operate at a deeper level than that suggested by the framing theorists: a pre-conscious or pre-reflective lvl.
Their focus upon PR, spin and advertising in movement mobilization really only scratches at the surface in relation to the role of meanings and symbols in movement struggles.

Thus we must abandon the commitment to the RAT model and embrace perspective which puts interpretative schemas and dispositions at its v heart. Can’t take for granted the ways ppl make sense of their environments, what their goals are, how they reflect upon their situations, etc

‘Frames’ seems too lightweight as a concept. Interpretative reality is (143) not simply a matter of cognitive frames, but of deeply held and embodied dispositions: an ethos and way of life.

Criticisms I have considered cast considerable doubt on the utility of ‘frame analysis’ as such. They suggest a need to go much further into the world of meanings and symbols than has hitherto been achieved

Tarrow - cycles of contention. Movements not evenly distributed across time. At certain points in history we see a great deal of movement activity, involving a great many movements, while at other times movements and protests are much fewer in number.
144) 'early risers' draw 'latecomers' in
145) diffusion of cultural frames
Why cycles come to an end is less discussed in the literature.
Tarrow:
1. Basic exhaustion
2. institutionalization
3. Factionalism
146) 4. agencies of control

Cycles do not disappear without trace. Many movement scholars argue they make important and lasting contributions to both political life and society more generally.
Most researchers agree that cycles are periods of great innovation which spawn new repertoires and frames, as well as new agents and organizational form

McAdam - notion of cycles implies we must learn to think about how movements develop together

147) not just the ‘highs’ which are of interest - need also to know how movements survive and fare through the quieter moments in political history

Repertoires of contention and frames prove inadequate to answer the questions that they raise and, as such, have a rather limited value. We should use them to open issues up but not allow them to close those issues down.

148) time has come to go beyond RAT
149) New social movements

major issue in European debates on social movements = question of ‘new social movements’ (NSMs)

150) NSM argument = rejection of Marxist analysis that puts major faultline in soc between workers and capitalists
152) NSM theory generally focuses upon the ways in which social movements seek to achieve change in cultural symbolic and sub-political domains
154) Habermas - system and lifeworld
161) Colonization of the lifeworld and the rise of NSMs
162) third link between NSMs and colonization concerns the fact that, having ploughed down traditions and stirred up a hornet’s nest of political issues, the administrative system proves largely unreceptive to public opinion and pressure. the public sphere has been largely eroded through the process of colonization, and the bureaucratic structures of the system are indifferent to communicative action and debate. Leads to tendency to follow ‘alternative’ and ‘contentious’ routes
163) Habermas doesn’t and arguably cannot tell an empirical-processual story about specific movement mobilizations and protests
164) Need to be wary of assuming that NSMs necessarily and always stand outside ‘the system’
166) For Habermas, rise of the NSMs is primarily an attempt to protect our lives from the encroachment of the state and also to free politics of the burden of its newly acquired domestic responsibilities
167) Habermas, Touraine and Melucci each take a step back from the usual battery of questions regarding the dynamics of movement mobilization and seek to identify both the key movement clusters belonging to any given era and the main structural tensions which those movements form around. This is an important step because it relocates our understanding of movements within an understanding of society more generally and becaue it raises additional questions about the significance or meaning of the movements we study and the normative claims which they raise
168) Social movements and the theory of practice: a new synthesis

Major fault line in all the theories discussed hitherto is the problem of agency and structure.
Most fruitful resolution of this problem lies in Bourdieu’s theory of practice.
advantages of his position are at the lvl of general theory.
He has relatively little to say about movements and protests.
I therefore also argue for incorporation of some of the central insights of movement theory into the theory of practice

171) Bourdieu - social practices are generated through the interaction of the bounds of specific networks which have a game-like structure and which impose definite restraints upon them.
172) Human action does not emerge out of ‘nothingness’, but rather out of a habitus formed by way of the history of the agent.
We make ourselves through our various ways of acting; our habits are a residue of our previous patterns of action

Different groups will tend to manifest different habitus because they have had to make a life for themselves in different circumstances
‘Habitus’ is our conceptual tool for mapping the structures and processes of subjective sense-making

173) 1. importance of individual and group lifeworlds in shaping action.
2. Grievance interpretation (174) and framing). Importance of political agents sharing or engaging with the habitus of their potential constituents (‘frame alignment’). B raises the question of the material and social circumstances which lead different social groups to have different habitus and frames. He advances a strong theory of symbolic power which examines the manner in which certain ‘frames’ (not his term) are elevated and politically backed, at the expense of others
3. Embeddedness of social agents. e.g. (175) over-involvement of educated middle classes in the political public sphere. B stresses middle-class nature of that political space in contemporary societies. Middle-classes acquire necessary cultural capital etc, for example through university education
4. The biographical root and impact of movement involvement. Involvement in political and movement activities generates habits which further dispose and enable one to engage in politics

B - Agents think, act, reflect, desire, perceive, make sense, etc, but they always do so by way of habits inherited from the social locations in which they were socialized, which are in turn shaped by wider dynamics of the social world

176) Social movements and political activities = collective work of skilled and active agents.
Actions not rooted in abstract logical calculations but in a ‘feel for the game’ which they have acquired through involvement in the social world

177) Repertoire choice, we may hypothesize, is a function of a player’s feel for the protest game, which is, in turn, a product of their specific biographical trajectory

Habitus = hinge between agency and structure.
Structures form agents who reproduce structures through their actions.
Structures are products of interactions rather than actions

178) economic, cultural, symbolic, social capital. Different agents and groups of agents (classes) possess these various forms of capital in differing amounts and ratios and, as a consequence, enjoy different life chances and opportunities

differentiation of society has assumed a horizontal form, dividing soc into discrete social spaces, ‘fields’, which B likens to ‘markets’ or ‘games’ - e.g. religious, political, artistic, educational.
Each field entails exchanges of the various forms of capital which circulate within them. Each field is like a distinct game

179) habitus is the ‘feel for the game’ which agents acquire through playing it and then subsequently rely upon in their actions

180) struggles often spread to different fields, wherein different constraints and logics come into play. Media game is quite different from the legal game. Diff balances of opportunities and constraints in diff fields.
Perhaps for this reason that many SMOs specialise in particular types of intervention or have speicalized ‘departments’ for dealing with specific fields

181) One campaigner I studied in my work on mental hlth movements was an award-winning journalist. It would be difficult to overstate the advantage this secured for her in media campaigning, relative to other campaigners. She had greater know-how and a range of social, symbolic and cultural resources to draw upon. This boosted her campaigning power outside the media field as well as in it. But her contacts, status and ‘feel for the game’ were, nevertheless, largely specific to the media field and, at the very least, served her best there. She was not well equipped, for example, to engage in legal battles.

Concept of fields allows us to appreciate how movements can become sites of internal competition and ‘games’.

B’s specific concept of political field - political agents seek political rewards. This = useful

182) Two-sided picture, in which movements involve both spontaneous, new and fast moving forces, on the one hand, and more durable structures of radical and movement politics on the other, is an important one

183) the internal environment of a movement may assume a field structure.
There is, within our society, a more permanent field of movement and political activism, a political field, wherein various movements stake their claim

184) The thematic issues raised in public discourse are but the tip of an iceberg with respect to legitimation, for Bourdieu. Beneath this level, supporting it, is a much deeper and broader lvl of unspoken and pre-reflective or unconscious ‘doxic’ assumptions which allow political society to function without calling it into question

When the ‘fit’ between objective structures and subjective expectations is broken the opportunity for critical reflection and debate upon previously unquestioned assumptions is made possible.

Moment/ period of crisis

186) Crossley - in contrast to B, I suggest that only certain habits are suspended in periods of crisis, albeit a sufficient number and range to generate a situation of ‘social unrest’ or generative ‘collective effervescence’.
Crisis situations allow for a different set of habits to kick in

187) Smelser - successful movement formation depends upon the interaction of six analytically distinct elements.
Table on page depicting 6 elements of Smelser’s approach compared to reinvented versions of this approach in more recent scholarly works covered in this book (Crossley’s overview). e.g. Operation of social control –> social control (McAdam), media (McCarthy)

188) Smelser’s multi-causal approach = important antidote to more recent monocausal approaches and attempts to find the ‘magic bullet’

More recent works should be read as refinements to Smelser’s

189) This value-added model must be brought to bear upon Bourdieu’s theory of practice if we are to achieve double goal of solving the agency/ structure problem in movement theory and achieving a cogent model of movement formation within the parameters of the theory of practice

resistance habitus:
- habitus can be born in periods of change and discontent and can give rise to durable dispositions towards contention and the various forms of know-how and competence necessary (190) to contention.
Protests and insurgency persist in habits of resistance and political opposition. Movements and protests make habitus that make movements and protests

Movement formation as culturally generative process - outlined by Blumer

Dialogue between movement theory and theory of practice

191) Between Bourdieu and the canons of movement theory there is a very fertile ground

Question 6

To look at after Crossley

Answer 6

More of crossley’s work, on anti-psychiatric and mental hlth survivor movements

McCarthy, anti-drink driving groups in US

Smith et al.

Klandermans

Bourdieu

Blumer

Question 7

Barnes, Harrison, Mort, Shardlow, Unequal Partners: User groups and community care (1999) - This is an oral interview report - PRIMARY SOURCE ???

Answer 7

4) User involvement is now treated as a policy imperative by the NHS as a whole
5) purchaser/ provider split introduced 1991
27) If the group adopted a deliberate campaigning stance this could be experienced as threatening by officials
29) development of the advocacy movement generally has given added confidence and legitimacy to those acting in role of lay advocate. ‘more confidence in challenging than I had then because there is now this understanding that it is acceptable to be an advocate’
31) Inequality of power
33) official - it has become the norm to acknowledge the stakeholder
35) user groups not seen by officials as representative of society as a whole, nor of all users
38) official remarks on how different things were 20 years ago - would assume knew what ppl wanted
41) official - This is at embryonic stage. Not too good at involving users at the macro lvl.
42) psychiatrist - problem of reactive user groups. Lack of expertise so more likely to pose problem than solution. Solutions put forward are sometimes impractical
44) positive view of user groups, seen as providing useful function
46) One mental hlth user group in our study focused its energies particularly on responding to younger ppl’s needs and decidedly did not engage in changing mainstream services, but set up an alternative resource. On other hand, this experience meant that group mems between them had developed a considerable resource of knowledge and skills which were clearly significant in winning respect and credibility from officials. Key players in user group had longer experience of mental hlth services in the city than many of the officiela w whom they were working
63) move to an emphasis on individual rights
68) sense of growing fear of the Coalition from local authorities, and the extra costs it could bring
69) Coalition and CIL were seen by officials as credible political actors and the focus of a collective, campaigning voice for disabled people’s rights as citizens
77) officials use of the ‘user card’ in debates over decisions to support their interests - user = important ally in negotiation process

81) User activists v aware of the consumerist rhetoric which was enveloping hlth and social care services during the later part of the 1980s and into the 1990s.
This created environment in which it was hard for officials to dismiss user views.
Language of consumerism had been well learnt by many of those active in the groups we studied

82) marketization. Importance of ‘choice’
83) concept of consumer choice attractive to Conservative govt because it represented a constraint on the power of professionals who were seen as self-serving
84) discourse of choice was prominent in interviews with activists in groups studied

Focus of mental hlth user groups on providing with information.
85) in certain context objective of ensuring ppl are better informed about med treatment is better understood as a citizenship right than part of a consumerist strategy

87) Choices being sought through the establishment of the CIL were primarily opportunities for disabled ppl to choose how to live their lives, rather than which service to turn to for help
89) Cooperation rather than competition was seen as the force for empowerment in relation to provision of more responsive services

90) Citizenship:
1. accountability
2. rights. No inalienable rights in UK - all these have been subject to negotiation and conflict and are open to change
91) 3. obligations

95) Mental hlth user advocate - ‘one of the major roles we play is actually to say, we are users, we can participate at this lvl, we can articulate, we can challenge, we can negotiate, we can write papers, we can do this, instead of [being] some bumbling idiot that doesn’t know what they are doing
97) disability groups - stressing right to run own affairs
100) ‘active citizenship’
101) must look at citizenship role of user groups as well as role in consumerist context
104) Hirschman (1970) - three broad models of the way in which actors might respond to dissatisfaction with an organization: exit, voice and loyalty

User groups in our study employed all of these, together with a fourth, to which we refer as ‘rewriting the rules’.

Loyalty = partnership and joint working
Exit = providing alternative to statutory services
Voice = exerting influence through expression of voice - individual advocacy, campaigning or lobbying. Diff types of voice - consumer voice; ‘expert’ voice; voice that had never been listened to; voice calling officials to account.
Those groups which were active campaigners also made use of the media to achieve influence.
Rewriting rules = attempts (106) to escape from present constraints by changing the assumptions upon which the present system operates. Not only practical changes - changes in the way in which professionals and lay people think about disability and mental distress. Professional training, contribution to theory through publication and research, direct action

107) difficult to avoid the conclusion that the user groups in our study had achieved for themselves a degree of influence that could not have been achieved by individuals. Yet groups’ influence remained fragile:
1. material. Unstable funding
2. human resources. Inability to demonstrate mass formal membership could hamper groups’ ability to be recognised as representative
3. Govt injunctions to listen to users have had some effect in changing officials’ attitudes. however, latter have retained the ability to adopt a tactical approach: to accept user groups, their activities and opinions when it suits local officials and to de-legitimise them in various ways when it does not. As long as managers’ roles are seen as ‘holding the ring’ among a plurality of stakeholders (of whom organised users are only one) in statutory services, the opportunity for them to attend only selectively to user voices will remain.

108) DATING OF RESEARCH: research had been carried out before Labour govt’s election 1997. Clear scope for the in-depth exploration of the ‘user as expert’ and its implications for professional/ managerial authority. Number of formal provisions have been made for national lvl user involvement in Research and Development and in the oversight of National Service Frameworks, and both these developments can be seen precisely as casting users in the role of experts, alongside other kinds of expert
109) underlying model of control in hlth care arena is still one of hierarchy rather than network: of govt rather than governance

Question 8

To look at after Barnes et al.

Answer 8

Hirschman

Question 9

Boehmer, The Personal and the Political: Women’s Activism in Response to the Breast Cancer and AIDS Epidemics (2000)

Answer 9

9) Mary Lasker and more money for cancer research
10) wave of ‘going public’ by well-known women in media mid-1970s

11) breast cancer survivor groups formed late 1970s.
these functioned as important resources and support systems for women who were living with this disease

advocacy-driven post-AIDS breast cancer activism of the 1990s.
Patient-driven self-help groups. Still exist today.

book focuses on grassroots (12) breast cancer activism groups of the 1990s

13) at first, gay community-based AIDS service organizations started with an uncritical view of modern medicine, one that expected to find a cure for AIDS. Soon replaced by a critical political analysis of medicine and hlth care.
Altman credits the lesbians who were active in AIDS organizations w having caused this shift in thinking

Role of womens’ activism neglected e.g. in Shilts’ And The Band Played On

15) ACT UP shifted the strategy from political activism of the early years and organizing around AIDS to a direct and visible approach.
The women in ACT UP publicized the ways in which women with AIDS have been scapegoated and framed as carriers of the disease

16) AIDS activism has served as model for organizing around a disease - therefore enabler for grassroots breast cancer movement in 1990s. However, there is also ample evd that these two diseases have been pitted against each other by politicians who were deciding about the distribution of resources

17) emerging AIDS organisations:
- provided services
- pressed for research dollars

18) Biggest effort of breast cancer movement has been to raise dollars for research on causes of breast cancer
19) Women and AIDS Coalition in Washington - takes direction from women on the front lines. Participants work together to bring women’s perspectives to the AIDS policy arena and ensure women’s concerns are not neglected in federal legislative and executive branch HIV/ AIDS policy

AIDS activists seeking to build coalitions with the establishment e.g. large pharma companies.
Started as outsiders then managed to build connections
Breast cancer activism arguing against links with the establishments

20) Prior to 1986, gay and lesbian response to AIDS was framed by empowerment through community self-determination

AIDS leaders’ decision to ‘de-gay’ AIDS, enabling them to attract more attention to the disease. In the long-term, AIDS depoliticized

26) social movement theorists oft focus on macro lvl.
Goal here is to find underlying processes and lessons we can learn from activists who are active within two movements that share differences and similarities

27) examining micropatterns.
Also of interest for others who are outside of the AIDS and breast cancer movements.
Understanding of these subtle internal movement dynamics also determines a movement’s ultimate success

38) word of caution - chopping lives up into pieces to examine them in social scientific fashion. In reality, these elements linked in complex and not v orderly fashions
39) both types of activist presented by media in inadequate fashion

40) women w HIV not presented as activists - frequently portrayed as adjunct to men.
41) women w AIDS or who are HIV positive are not consulted for AIDS reporting and not perceived as acting subjects or activists.

Media construction of a ‘woman AIDS activist’ = woman not infected w the virus. Celebrity or lesbian. Impression these women active on behalf of men w AIDS

42) Cancer activists are never presented as being active for reasons other than perceived self-interest due to their cancer.
Women’s cancer activism is publicly framed as evolving form the hands of first-time activists and based on polit activism of the 1960s as well.
43) activists depicted as white, m-c.
Missing = image of cancer activists who do not have the disease themselves.

44) course of disease affecting timing and duration of activism
45) within AIDS, being poor and of colour is frequently the background of HIV-positive women who turn to activism.

AIDS and cancer activism have politicised new groups never before active

AIDS activism oft framed by AIDS activists as merely a slight variation on what they have done all along - fight for survival

46) survival skills within context of AIDS rooted in a marginal culture
47) National Breast Cancer Coalition has advocacy training program that teaches women how to lobby

Personal resources, as defined by social position

Survival skills of AIDS activists. Technique used for selling drugs now used for AIDS and safer-sex peer education

48) cancer activists have more socioeconomic resources at their disposal and, generally speaking, cancer movement’s culture is anything but ‘marginal’
49) Interaction between skills and external conditions

AIDS activists have created change within hlth arena. Changes in conducting of and access to drug trials, speed with which drugs are approved, creation of dialogue between activists and pharmaceutical industries, willingness by major hlth institutions e.g. CDC to meet with hlth activists.
In 1990s, when breast cancer activists obtained media attention and cancer grassroots groups were mushrooming all over the country, the response to breast cancer activism was different due to the window of opportunity created by AIDS activism.
Breast cancer activists were ‘courted’ to a certain degree by the establishment.

50) tools and skills of the white middle-class are necessary for being invited into dialogue w govt institutions and hlth power brokers
56) connections or bridging differences between groups of activists are made poss by uniting around the theme of oppression - race, class, sexual orientation - in HIV/AIDS activism.

Connection among cancer activists is based on sharing gender oppression

Cancer movement’s culture thrives on white middle-class values, tools, and resources

57) women’s motivations are a mixture of personal and political relationship to a disease.
Existence of just one of the two connections is not sufficient to motivate women to activism.

58) three motivational approaches: diagnosis, community activism, political-ideological approach
59) diagnosis - change in hlth status leading to change in personal identity, which leads to embracing of collective political identity

community activism - personal identities already overlapping w collective identities. Radicalized by a disease that affected their community

political-ideological appraoch - applies to activists who have been motivated predominantly by a collective identity - e.g. white women who embrace anti-racism. Motivated by ideology predominantly

Some of the interviewed activists share, in reality, more of the elements that constitute specific ideal types

68) significance of ‘others’ on whose behalf activists mention they are active. Differences in these between different movements
74) Coming to activism through one’s professional skills, combined with community focus, is the most common motivation for women of colour

95) The ideal types of motivational forces for activism can be distinguished by the different weight of each of tht two components - personal relationship and the political relationship to the disease.
This explanation for activism is more complex than the commonly perceived explanations of solidarity and self-interest.

98) William Gamson’s three layers in which collective identity is embedded - specific movement organization, movement (AIDS movement or cancer movement), solidary group (e.g. lesbians, communities of colour, women)

Whittier - collective identity formation is the outcome of a process, not static

Kurtz - identity practices for evaluating collective identities of movements. Generally not the outcome of direct and conscious decision-making:

1. issue/ program formulation
2. framing of the issues and movement
3. outside support resources drawn in
4. Movement culture
5. organizational structure
6. Leadership/ organizational power

120) Boehmer - need to add a 7th - distribution or spending of resources.

Operationalization of collective identity into identity practices gives them tools for intervention.
Once awareness exists about certain social practices that interfere with the movement’s pursuit of a politics of diversity, activists can change any practice that is debilitating to the movement’s goals.

121) Liberal feminist activism around cancer highlights that the focus is on all women and thereby operates with an additive oppression analysis
125) AIDS movement’s changing style of activism. Gradual implementation of multicultural concerns - e.g. in HIV prevention work.
126) long as breast cancer activism operates using practices rooted in white middle-class activism alone, will not be inviting to and capable of attracting poor women and women of colour in the movement
128) Broadness in goals and messages is required when the needs of the diverse communities are taken into consideration. Messages must speak to real-life situations of diverse populations and not just sum up the bare ‘mechanics of the issue’
129) Messages of activism must be presented broadly enough to reflect different societal conditions of various groups, but they must also speak visually to a diverse population
130) at present, a poor black lesbian mother is not visually attracted to join breast cancer activism, because the breast cancer movement uses the symbols, icons and language of a white m-c and highly educated population
131) overall, the AIDS movement uses celebrities more successfully as icons that can speak to a more diverse community
132) ideology determines the distribution of resources

Contributions from profit-driven sponsors are often not easily aligned with a movement’s goals

133) criticisms of alliance between pharma industry and AIDS activism. Drugs companies pulling the strings according to one activist.
134) Building alliances e.g. cancer movement with environmental movement

136) cancer movement's proximity to women's movement and women's health movement.
Cancer fits comfortably into a feminist agenda that prioritizes the needs of white middle-class women, whereas AIDS does not - explains why women's movement has embraced cancer rather than AIDS.

137) AIDS movement more closely aligned with the gay and lesbian movement

W the exception of lesbian cancer organizations, the cancer movement does not reach out to the gay and lesbian movement. Gay and lesbian movement, however, frequently integrates breast cancer in its agenda

140) the effective technique for mobilization of a movement is to put more emphasis on the opposite quality (whether personal or political) of the movement’s framing. E.g. cancer pursuing political, AIDS pursuing personal
141) AIDS Quilt makes the disease personal

movement’s politicization of cancer, by pointing to the societal neglect of women’s hlth and the sexism that dominates med, was an effective strategy for activism

146) different stages of mobilization

AIDS movement is more mobilized.
Shows that the more mobilized the movement is, the more diverse the resources that are used by its activists. Drawing on more diverse community

148) more mobilized/ evolved movements are multidimensional in every way - constituency, resources, organizing styles, recruitment techniques

149) activists within a movement have to walk the thin line of uniting ppl based on their common grievances while acknowledging the groups’ particularities.
For an achievement of this balancing act, movement activists’ perception of the world must be flexible and must encompass an understanding of the specific issues of AIDS and breast cancer and include, among others, racism, sexism, classism, heterosexism, ableism. Balancing act is further developed in more mobilized movements. Less mobilised movements have yet to work on the transformative consciousness needed for performing the balancing act

Most important requirement for achievement of such transformation is communication. Communication within a movement must be open about existence of differences.
Cancer movement has yet to reach open communication about differences.
150) discourse of ‘we are all women’ does not take into account that women’s life situations are different, depending on whether lesbians or straight, rich or poor, white or of colour.

Remaining aware of long-term goals requires activists to undergo the painstaking process of acknowledging and addressing differences

151) creation of a collective identity that is broad enough to reflect different groups and unite them is the most central task of social movements.
I expand on this common thesis by stating that constructing a broader collective identity is central to evolving into advanced mobilization.

152) strategy of fostering support among already-existing movements by framing in terms of issues relevant to them - gender, class, race, etc.

Opening up a movement’s collective identity toward more inclusivity can potentially cause a movement’s vision to become murky

Has to be a balance between being exclusive due to a narrow focus and being an all-purpose movement (153) that is inclusive by adding on to the initial issue. Issues added on to initial issue must complement it. Adding on issues is not what is meant by the broadening of a movement’s collective identity to reflect diversity to be more compelling to a diverse community. maintaining focus on original issue, but expanding into a more multilayered picture that reflects the issue through lenses of race, class, gender and sexuality

155) appears to equate more evolved mobilizational stage with social change

Question 10

Kimber, Richardson (eds.), Pressure Groups in Britain: a reader (1974)

Answer 10

2) a group is said to exist when two or more individuals interact, on the basis of shared attitudes, with a certain minimum frequency.

Pressure group may be regarded as any group (3) which articulates a demand that the authorities in the political system or sub-systems should make an authoritative allocation.

Sectional pressure groups seek to protect the interests of a particular section of a society while promotional pressure groups seek to promote causes arising from a given set of attitudes

6) Truman - group is not a collection of individuals but a ‘standardized pattern of interactions’.
11) List of pressure groups - BMA, CND, etc
12) Problem of groups belonging to several categories

Since it is more desirable from a group’s point of view that it should play a part in the formulation of policy rather than have to wage a public campaign after policy has crystallized, much pressure group activity is directed towards the administrators, esp at the national lvl

Eekstein - ‘the public campaign has been replaced largely by informal and unostentatious contacts between officials’

This claim looks rather odd set against the almost daily press reports of public campaigns

In many instances groups try to use several channels simultaneously. Common for promotional groups to submit memoranda to the relevant Department, lobby MPs, and utilize mass media concurrently, to lobby MPs (as was done in National Parks Campaign)

Groups not having access to the (14) Executive sometimes use Parliament as a means of gaining access, by getting an MP to raise the matter (maybe privately) with the Minister.

Success or failure of groups in their dealings with Parliament is much more likely to be a function of factors other than party. E.g. Govt’s own strategy may play decisive role.

Some writers have overstated the importance of party in processing group demands.

Overall parties play relatively minor role as channels of influence.
Most groups remain unaligned.

15) more important to most groups is the cultivation of public opinion and the use of the public campaign.
Central role in the communication process occupied by newspapers, radio and TV makes coverage of their activities extremely valuable to pressure groups, esp in view of the propensity of govts to respond to the press and broadcasting media.
Media find group activity to be convenient and sometimes entertaining or dramatic copy, and are oft receptive to suggestions for stories from group publicity officers.

16) Not all pressure group activity is directed towards influencing govt policy. Pressure groups feature in operation of all other aspects of polit system.

Explanation of group behaviour must be in terms of the whole strategic situation in which groups are placed

24) Internal political processes of pressure groups are an important determinant of their behaviour
25) Importance of chance factors e.g. Thalidomide tragedy in the development of many political issues

Lieber, R., Interest Groups and Political Integration: British Entry into Europe:

28) Bases of group influence:
1. Advice
2. acquiescence = necessity if govt programmes are to operate successfully
3. Approval of the groups concerned is required if partic govt policies affecting them are to possess legitimacy

29) Sectional pressure groups reflect interests of the economic or occupational sections they represent.
Promotional pressure groups - organized around attitudes and seek to persuade ppl w/o regard to their sectional affiliation.
Sectional groups’ bargaining power rests upon their performance of crucial productive functions in the society.
Sectional pressure groups seek to enhance own legitimacy by identifying themselves with some conception of broader national interest which their actions are designed to advance

31) Result of politicization is to transfer the subject from consideration by the processes of functional representation, in which sectional pressure groups are dominant, to the channel of party govt, in which parties play the leading role
34) Haas’s functionalism assumes economic self-interest more important than political commitment
46) From example of British Entry into Europe, conclusion = group influence in foreign policy is inversely proportional to effective politicization

Roy, W., Membership Participation in the National Union of Teachers:

100-1) Protest meetings. Establishment of a Fighting Fund
102) Pressure of rank and file on the Executive to take militant action before the Second Reading took place

103) threat of strike action
121) London-centric British political scene. Political cause worth its salt must make its name in London if it is then to make its name in the country

Christoph, J., Capital Punishment and British Politics: the Role of Pressure Groups

145) Abolitionist groups initially at disadvantage bc unable to make use of two important elements of power in the British political system: parties and administration.
The most successful pressure groups are those that have continuous access to party leaders and key figures in the ministries

146) It is a sign of the comparative weakness of attitude groups that, in contrast to most sectional pressure groups, they must often resort to burdensome and unpredictable mass campaigns.
Attitude groups less potent than sectional groups bc they do not rly have an identifiable clientele or possess much control over their subject matter.

Pressure groups able to use murder cases in media to great advantage.

Further difficulty for attitude groups e.g. the abolitionists - grows from generally small size, lack of economic power, and sporadic success in gaining the attention of the public.
Inability to threaten official groups with political or economic consequences for any refusal to accede to their demands
147) 4 main functions of pressure groups here:
1. kept the death penalty issue alive
2. Prevented cause of abolition from getting the crackpot label. All too often reformist groups put themselves beyond the pale of the political process by becoming identified with harmless or questionable fringe elements in society. respectability sometimes is attached to numbers, but also (where numbers are not available) to assoc w prominent and respectable sectors of the community.
To cultivate respectability, Emphd the empirical nature of their case and went out of their way to dissociate themselves from highly emotional and sensational appeals.
Made conspicuous use of resources of the Howard League - organization known for its responsible approach to penal reform.
Took special pains to include in their membership ppl of avowed conservative views, e.g. Tory humanitarians, peers and social leaders.

148) 3. Pressure groups mobilized favourable public opinion and provided outside support for the small band of abolitionists in Parliament. To this group of backbenchers such support was politically and psychologically necessary in their arduous uphill struggle.

General inability of political parties in a two-party system to adopt and press unpopular ideas. Strongly-felt ideas wld be in constant danger of disappearing if they had no other outlet.
4.Presented to Parliament ideas and choices that its Members might have avoided facing in the normal course of party govt.

Here, ideas and events were more crucial than the actions of groups.
Happenings inside Parliament generally overshadowed those on the outside.

149) This case study = testimony to the validity of multiple causation in politics and warning against the temptation to view the polit process in Br as easy and coherent

Hindell, K and Simms, M., How the Abortion Lobby Worked

154) Thalidomide changing opinion
156) by 1966 individual membership over 1000

157-8) Conducting surveys and using for good publicity

159) more use of survey data

161) lobbying.
162) Abortion Law Reorm Assoc - small pressure group with a single clear-cut purpose.

163) Abortion lobby became successful when it was able to demonstrate to Parliament that despite religious opposition, public opinion had finally caught up with the views it had been expressing for thirty years.
The lobby did not create this opinion, for many factors were at work, but it did influence public opinion, hasten it, and organize it when the time was ripe. W/o ALRA, reform wld not have come as early or as radically.

Kimber, Richardson, Brookes, The National Parks Campaign

175-6) Failure of public media campaign - attempt to show ground-swell of opinion, designed to convince Govt and Parliament of the political as well as functional desirability of independent Park administration
Failure of National Park Day - only 2500 attendance at protest meetings around the country
Shift of activities into Parliamentary arena.
SCNP sends periodic deputations

185) The mass media are currently (and fashionably) sympathetic to the cause of environmental organizations and help to generate public sympathy on a variety of issues.
Environmentalists have managed to create a ‘halo effect’ for environmental issues. They have done this largely through public campaigning and it is an asset.
Following a similar public campaign, the Civic Trust and CPRE were successful in modifying the Govt’s policy on heavy commercial vehicles and in securing formal consultation rights with the DOE.
Have used the technique of public campaigning to secure access to the administrative channels normally used by those sectional interests

McKenzie, R., Parties, Pressure Groups and the British Political Process:

276) Activities and influence of pressure groups have increased in recent decades

286) Danger of interests of the ill-organized being ignored.
But it is politicians’ ultimate worry to see to it that the ‘little men’ do not revolt against their policies in such numbers as to bring about their electoral ruin. This surely is one ultimate safeguard of the ill-organized

Pressure group system provides an invaluable set of multiple channels through which the mass of the citizenry can influence the decision-making process at the highest levels

Question 11

Alderman, G, Pressure Groups and Government in Britain (1984)

Answer 11

4) American citizens who wish to make any impact upon their state or federal govts must organize into groups. There is no other way
5) Lobby today in British context = any group which seeks to influence public policy directly, through any of the organs of govt, or indirectly, through an agency which, though not itself an organ of govt, is perceived as having influence over govt

13) 19th C mushrooming of philanthropic and ‘worthy cause’ groups - e.g. Anti-Slavery Society 1823.
Anti-Corn Law League = most successful pressure group

16-7) Rise of pressure groups after Second World War - expansion of educational opportunities bringing into existence new middle class.
Flowering of a consumer-oriented society, w higher standards and expectations

18) 20th-C pressure group can be unorganized
19) Pressure group need not have any formal structure.
Largest and most powerful unorganized pressure group in Br = ‘the City’

20) policy outcomes of British central govt are as much the product of inter- and intra-departmental conflicts as of pressures from outside

21) Purpose of pressure group is not always to influence govt. May be simply to influence public opinion, or just a special subsection of the population.
Many ethical and moral groups are of this type

Pressure groups = those units, organized or not, of the democratic process which have a set purpose or set of purposes, but which are nonetheless neither political parties nor formal agencies of govt.
They have evolved, historically, as a form of functional representation made necessary by the limitations of or defects within other organs of British govt: principally, the atrophy of traditional methods of representation of views and accountability; decline of popular faith in the parliamentary process; growth in power of the civil service; inability or unwillingness of political parties to deal with particularly sensitive issues.
They are integral part of political, parliamentary and governmental process.
They are as much a part of the machinery of the constitution as the monarch Herself

22) Classification of pressure groups has become a veritable cottage industry among political scientists
42) Study of cause groups shows dramatically how dangerous it is to speak of pressure groups only in an organized sense. Propaganda by British Jews on behalf of Soviet Jewry etc, owe much to individual initiative which it wld be wrong to suppose is always orchestrated

47) Many cause groups are oligarchies and nothing else: the oligarchy is the group. Membership rolls, where they exist, tend to be small.
Membership of the Abortion Law Reform Association never reached more than about 2000.
Supporters diff to members.

Those who lead cause groups are generally much freer than those who lead sectional groups to do more or less as they please.
Since cause groups depend heavily on public sympathy for their effectiveness, the quality of the leadership is of paramount (48) importance.
Cause groups have to work harder for their income and are much more sensitive to popular whims. Cause groups lead precarious lives. The byeways of British politics are littered with causes that have failed

69) Pressure groups’ use of all-party comtes and their decisions to claim extra authority for extra-parliamentary campaigns

70-1) Some groups employ a parliamentary agent/ consultant to devel contacts w MPs

72) entire campaigns on behalf of clients, oft v secretively
74) Parliamentary consultant knows precisely which MPs to contact and in what manner

76) 20th C, central arena of decision-making has moved to Whitehall, from Parliament

79) three areas of essential co-op between pressure groups and civil servants from point of view of central govt:
1. formulation and execution of policy
2. staffing and operation of govt agencies
3. provision of information
4th area where not essential but highly desirable - legitimation of govt policy

82) influencing govt policy via advisory comtes
86-7) areas where govts have devolved policy-making, in whole or part, to pressure groups

100) Problem of differential access to Whitehall between pressure groups.
Pressure groups which have something to offer govt - information, expertise, administrative services - are bound to find access to govt bureaucrats much easier to achieve.
Those which have nothing to offer will have to shout long and hard before they are heard; even this may not succeed.
Fact of political life in modern Britain: those who wld influence govt thinking are well-advised to work through an existing, established and accepted group, if they can, than to form a new organization, whose right to be heard and to be consulted may take years to achieve

102) sometimes argued that pressure groups ‘go public’ from weakness: a pressure group which launches a public campaign is virtually admitting that its ability to influence Parliament or govt discreetly is limited or probably non-existent.
This v oft not the case - e.g. public campaign to abolish the death penalty for murder was the only way such a reform could have been achieved; a private arrangement between the Home Office and the Howard League was out of the question given extreme political sensitivity of the issue.
Coxall - on controversial issues, mass publicity may be counter-productive
Punnett - pressure-group activity through public opinion ‘is the most conspicuous but at the same time least rewarding activity. In the main it is undertaken as a last resort’.

Alderman - a public campaign may not have as its objective a dramatic shift in public policy; its object may well be to educate the masses rather than persuade an elite. Its success may have to be measured in years, perhaps even in decades, rather than in parliamentary sessions

103) some cause groups are little more than educational campaigns
106) campaigns for homosexual and abortion law reform were both educational and political
107) Shelter = both a movement and a pressure group; it sought to (108) influence govt, but only as part of a wider campaign in which self-help and self-awareness played important part
108) Disablement Income Group successful through pitching diff publicity campaigns at diff levels in society. Media attention.

Legislative or administrative action can only go so far in alleviating the worries of the disabled. If public attitudes are to be affected, parliamentary campaign may be a waste of time.
Mass campaigning = only was to achieve change in public perception of a particular issue - e.g. CND

112) Nov 1981 Action on Smoking and Health campaign - in conjunction w Hlth Ed Council, sent leaflets to Britain’s 25,000 fam docs urging them to ‘‘prescribe’ the giving up of smoking by their patients. Educational but should also be seen w/in context of wider effort to persuade govt to take tougher stand against advertisement and sale fo tobacco products

‘fire-brigade campaigns’ appealing to govt in advance of important events e.g. budget-day to catch attention of high-powered politicians e.g. chancellor.
114) fire-brigade campaign must either appeal to self-interest of those in authority, appeal to their better judgement, or confront them with a situation potentially far more damaging than that envisaged by the policy they wish to pursue

117) Unmistakable lesson: as a form of public pressure, illegality can pay handsome dividends. Sometimes the illegality can be quite open and deliberate. Nov 1976 the Sikh community was successful in obtaining statutory exemption from the law requiring motorcyclists to wear crash helmets.
The Sikh religion prohibits wearing of a head-covering other than the turban, and Sikh motorcyclists had demonstrated their willingness to face criminal charges rather than forsake the precepts of their faith. Parliament gave way to them.

119) Fact that the stated objective of a publicity campaign is achieved does not necess mean that the achievement was due to the campaign.

Any form of public campaigning depends crucially on the reaction of the media.
Need for positive element of attraction to induce media to cover a campaign.
Favourite device used by modern British pressure groups is issuing of a ‘report’ or ‘survey’

120) second device - legal action. Will always attract media coverage if on significant scale. Report or survey may also do so, tho more easily in the press - and quality press at that - than on television.
Television coverage of the activities of a pressure group is highly circumscribed. If the campaign is at all intellectual, coverage is likely to be restricted to a late news magazine programme, e.g. ‘Newsnight’.
TV coverage = geared to what is visually effective

121) Going public may be last-ditch effort to attract attention of those in authority. But is not (122) usually so, nor is it really a sign of weakness.
It is oft an important component of a wider campaign, and it may be an essential pressure group activity. It can be as effective as discreet negotiations, and it can bring valuable rewards

125) Modern British pressure groups can be very powerful; public policy is oft dictated or strongly influenced by the interaction of different and competing groups; good government demands the cooperation of pressure groups

Long tradition of pressure group response to unwelcome activity by the legislative and executive organs of govt.

Approval of relevant pressure groups is essential component of process by which actions of govt are legitimized

135) Pressure groups can create public opinion where there is none to be found and, by concentrating upon the small elite of decision-makers that rules the country, are able to affect the deployment or redeployment of national resources without reference to the general will
141) Benefit to pressure group if the organization attracts into its employ a Minister or civil servant from the govt department with which it has had most dealings
146) the rich do not always win

150) enormous contribution which pressure groups make to the workings of govt.
Domination of British politics by political parties could result in the eclipse of many sensitive issues which are simply too controversial and divisive for the parties to handle. That such issues have been aired at all is due entirely to the existence of pressure groups

Question 12

Baggott, R., Pressure groups today (1995)

Answer 12

2-3), diff ppl’s definitions of pressure groups, quoted

9) some authors don’t like term ‘pressure group’. Prefer others e.g. ‘pressure politics’ - (10) a process rather than set of distinct institutions (Bentley)

Jordan and Richardson (1987a) - emphasis is more about pressure between bodies rather than about formal groups

11) narrower definitions focus our attention upon role of organisations which lie beyond govt and party politics - e.g. charities, business organisations, voluntary assocs, prof bodies and trade unions - while the broader interps remind us that in practice these organisations are oft highly integrated with other political institutions within the policy process, and that we should not neglect the relationships between groups or those which exist between groups and other polit organisations

13) key distinction - interest and cause groups
14) table on classifying pressure groups (ACT WLD APPEAR TO AT LEAST SLIGHTLY STRADDLE BOTH CAUSE AND INTEREST THO MORE CAUSE)

18) Benewick - pressure groups can be divided into three ‘worlds’. First includes those whose access to decision-makers is continuous, who have resources which are impressive and seen as legitimate by govt.
Groups occupying the second world can obtain access to decision-makers, but contact is less frequent.
Third world groups are not perceived as legitimate and do not generally have access to decision-makers Militancy is this type of group’s main resource

Grant - insider (consulted by govt) and outsider typology. (19) this is flexible - based on status, which may be acquired or lost as circumstances change.
Insider groups oft undertake combo of both insider and outsider tactics

Whiteley and Winyard’s (1987) study of the poverty lobby led them to classify groups in 4 dimensions -
1. strategy. F= focused (on Whitehall), O= Open (adopted broad range of strategies)
2. Support - P= promotional (speaking on behalf of a client group), R = representational (directly representing mems of a client group
3. Status - groups classified as A = Accepted (by policy-makers) or N= Not accepted
4. Aimes - Groups classified as L= Lobbying (primary purpose to lobby policy makers) or S = service provision (main purpose to deliver services to a client group).
Most common in poverty lobby = OPAL
22) policy-making stages. Starts w political agenda, then policy formation

23) Political arenas/ pressure points - (24) e.g. House of Commons, House of Lords
25) policy networks - policy communities and issue networks, w more unstable relations between members
50) New Right critique - pressure groups pressuring govt to take on too many responsibilities in post-war period
57) to make the most of resources and exert maximum influence over policy a pressure group must be well-organised

58) good leadership essential.
Good leaders must:
1. be effective negotiators
2. be willing to work with other pressure groups towards common goals
3. have charisma and persuasive personality when dealing with media and politicians
4. Sound financial management/ administration

60) potential damage of internal discord
71) low levels of participation may reflect that the membership is broadly happy with the policies, leadership and management of the organisation

Support for the view that the more bureaucratic and centralised a group is, the more effective it will be (Gamson, 1975).
Lowe and Goyder (1983) have observed that groups run by a small elite are more flexible tactically in dealing with organs of govt .
Mike Daube, former director of Action on Smoking and Helath - the most effective pressure groups tend to be those which can be run by a small, highly professional core.
Groups should seek to harness mems’ support rather than deny them influence.

72) group which is representative is likely to have considerable legitimacy from point of view of those in govt

Formation of coalitions

74) diff lvls of coalition:
- keeping one another informed of actions
- joint report on issue of common interest
- joint delegation to Parliament
- formation of joint organisations/ comtes

76) competition within pressure group world.
ideological divisions.
77) Resources:
- Financial
79) - sanctions - govt dependent on the group’s co-operation

81) - social resources. Mobilising support of public. Status and prestige of members. (82) Public support on the basis of respect, or bc plight of group’s members has attracted the sympathy of the public.
If client group is one which does not readily attract public sympathy (criminals for example) the group will face an uphill struggle. In many cases groups face an adversary competing for the sympathy of the public, which makes it more difficult to mobilise public support

• resource of political contacts
  83) sharpest contrast = between the large mass member democratic group and small elitist campaigning body

84) resounding message is that the most influential groups are those which have good contacts with the executive arm of govt.
Executive = the offices and institutions at the heart of govt

87) advice and consultation to executive
88) formal consultation
89) advisory comtes
92) personal contacts and informal links
94) pressure groups keent o employ personnel with knowledge of the corridors of power, such as former civil servants
96) importance of stable relationships
97) main distinction = between policy communities and issue networks.
Issue networks are more fragmented and open, links between groups and govt are not close and the opportunities for co-operation limited.
Policy communities are relatively exclusive. Groups have privileged links w govt and there is a great deal fo trust and co-operation between the two.

Close and harmonious relationship easier if seen as legitimate by govt, and able to co-operate with govt.
98) for cause groups, legitimacy seen in terms of public support.
Legitimacy can also be acquired by building credibility among ministers and their officials.
Credibility depends crucially on the knowledge and expertise of the group and its ability to express itself clearly.
Forms of co-operation include providing advice, assisting with policy implementation, and ‘obeying th rules of engagement’

99) ability to offer ‘expert’ advice
100) Ryan - groups with a poor or distant relationship with govt can oft have impact on policy by challenging the prevailing policy paradigms

102) McKenzie - in pressure-group politics, access does not always equate with influence.
Govts have different ideologies, programmes and styles which favour some groups at the expense of others

104) import of govt’s policies to pressure group success, and of govt’s policy-making style
105) some pressure groups discriminated against bc of party allegiance
109) Thatcher govt - hostile attitude towards pressure groups
111) Thatcher govt retained most of the procedural formalities of the consultative process - produced many consultative documents
115) in one study just under half of the groups surveyed perceived no change in the frequency or effectiveness of contacts w ministers and civil servants during the 1980s

124) Major govt - signs of re-emph on philosophy of consultation
38% pressure groups believed political environment had improved since the departure of Thatcher. 58% no signif change

govt relations with med profession had deteriorated 1980s

130-2) Major govt’s approach to law and order issues/ law and order lobby - similar to predecessor - attempting to ride roughshod over interested parties, failing to consult adequately, and grudgingly giving concessions when the forces rallied against it proved too strong

132) increased inlfuence of moral right under Thatcher/ Major

133) Successive election victories of the Conservative Party seem to have benefitted groups which share its broad ideological vision and disadvantaged others, which do not.
Ministerial changes can have an impact given the diff styles, personalities and prejudices of individual ministers

135) If policy-making dominated by the executive arm of govt, why do pressure groups invest so much time and effort in parliamentary lobbying?
Rush, 3 explanations:
1. they fail to perceive Parliament’s place in policy-making process, believing it to have more influence over policy than it does.
2. Parliament is used when pressure elsewhere has failed
3. Parliament does have impact on policy

Even the least experienced groups soon learn Parliament is not all-powerful

136) Judge - insider groups have higher frequency of contact w Parliament and are generally more active in Parliament
137) oft v useful to have a parliamentary base from which to launch campaigns on specific issues where insider strategies have so far proved ineffective, or to supplement lobbying via internal channels

138) Groups oft gain both credibility and publicity from MPs speaking out on their behalf.
MPs also useful informants. Can advise on strategy

139) Sometimes Parliament can be influential over policy, e.g. where free votes are allowed.
141) Private members’ legislation.
Any govt, provided that it has a majority, can block the progress of bills which it dislikes, even when there is a considerable amount of parliamentary support for them. This is usually achieved by refusing to allocate the bill sufficient time, or by getting govt backbenchers to sabotage it - e.g. where Department of Social Security found to have played major role in wrecking a private member’s bill which aimed to extend the rights of disabled ppl.
Party discipline makes it difficult for pressure groups to persuade MPs

142) as long as govt has a majority its view will generally prevail on the key issues.
MPs can raise issues, helping to influence political agenda.
In longer term, the sentiments expressed in Parliament can filter through into govt policy.

Oral questions
Early Day Motions. 143) If a motion attracts a large num of supporters this attracts got’s attention.
Initiation of debates - though these seem to get little publicity.
Private members’ legislation - tho vast majority of these bills fail. Most are introduced without any real hope of success, but with the intention to raise profile of an issue.
Important role of parliamentary comtes in raising issues, particularly the departmental select comtes

144) lobbying of MPs - individually or lobbying MPs who are mems of a formal comte (145) or group. In practice groups tend to pursue both strategies at the same time

MPs = easily accessible

146) choice of who to lobby = important.
Difficulties of inning over neutral and hostile MPs

148) departmental select comtes = increasingly important.
Judge - if pressure groups can influence the recommendations of comtes they can add considerable weight to their case, giving it a certain legitimacy.
where the govt rejects recommendations it oft has to justify its decision

153) sponsorship of MPs and political consultancy
160) commercial lobbying firms

163) House of Lords = significant target for pressure groups.
Between 1979 and 1990 the House of Lords defeated teh Conservative government on over 150 occasions. Even the reversals had publicity value.
Groups can persuade peers to initiate or participate in a debate, to table questions or introduce a (164) private member’s bill. They may also give evd to select comtes.
Profile of the Lords has risen in recent yrs, bringing extra publicity for issues raised there.
Broadcasting of proceedings helping to raise profile.

Groups which have not been properly consulted by govt, or whose views have been ignored, have found the HoL partic useful.

165) like MPs, peers have various interests which make them more sympathetic to some lobbies than others.
166) vested interests of MPs and their close relationships with some groups creates an uneven playing field, reinforcing a bias in favour of some interests and against others
167) instances where group must show it has wide public support

168) ways of demonstrating public support:
- formation of a group
- size of group membership
- large demonstrations and protest meetings

169) number of pressure groups increased post-war period
172) one explanation of rise of groups - perception that ordinary ppl are more willing today to protest about decisions which affect their lives.

There is much to suggest that the public is more assertive than in the past, and is more willing to get involved in political activity when faced with an unjust decision

174) why do pressure groups undertake public campaigns?
- public backing oft needed in order to launch an issue on to the political agenda. If groups can generate enough public concern, the govt may be forced to consider issues outside its original agenda
- public support valuable as part of broader campaign to influence govt policy
176) - stimulating public debate whne other channels are deadlocked

180) demonstrations can backfire - e.g. if poorly attended

182) Seymour-Ure - mass media = simple term which grows more elusive once analysed
183) TV = most popular source of news.
Most pressure groups operating at national level regard TV coverage as most important.
1/5 respondents to the Study of Parliament Group survey regarded the media as the most important pressure point when seeking to influence policy.
Many groups now employ ppl who have previously worked in the media to handle their public relations efforts. Experience and knowledge of how the media works, and possess wide range of contacts working in the media

184)number of campaigns have used advertising. Poster or press advertisements get message across directly to the public. They also generate further media coverage for the campaign.
Large-scale publicity campaigns are extremely expensive, and affordable only by the wealthiest pressure groups

186) other organisations helping meet costs of advertising

187) News management:
- when issue already topical, groups find it relatively easy to get their views across simply by briefing the media. Indeed, groups are oft approached by reporters, hungry for info.
Other occasions, groups face uphill struggle.

Publishing of report highlighting an issue - if report carried out by other organisation, tends to give findings greater credibility in the eyes of the media and public because the agency which has compiled the report is perceived as independent.
Use of social surveys -opinion polls, stat analyses. Results are oft attractive to the media since articles can easily be written around them. Results carry greater weight if work undertaken by independent market research or polling agency
188) publicity stunts

189) much media coverage = passive. Particular pressure groups or their campaigns are neither explicitly endorsed nor criticised.
Bias against certain groups exists in the media.
Media openly support certain campaigns - Sunday Times, campaigning on behalf of ppl suffering from Thalidomide side-effects

Broadcasters oft feed upon pressure-group campaigns in a way which leads to the mobilisation of public support

190) documentaries. Consumer programmes e.g. BBC’s Watchdog -actively involve din a wide range of successful campaigns.
When parts of media actively support a campaign they are in effect acting as pressure groups in their own right

192) public campaigns oft costly. Have potential to produce adverse response, stimulating more opposition than support

220) many groups have found the political environment inhospitable since the election of the Conservative govt in 1979.
Some groups given fewer opportunities to comment on proposals at early stage

221) political culture has continued to favour the growth of pressure-group politics.
Continued decline of class politics, growing importance of single issues, particularly quality of life issues, and the growing assertiveness of the public have all been reflected in increased participation in pressure groups. Trend also reflects to some extent dissatisfaction with other representative institutions, such as political parties

223) pressure-group campaigns are becoming professionalised. Groups now directly employ specialists to a far greater extent.

Quality of democracy in pressure groups is variable

226) Accountability. Groups oft publicise not only their own activities but those of other groups as well, in an attempt to raise public awareness of their campaigns and to promote criticism of their opponents’ tactics.
Pressure groups can force govt to justify its policies in public, again strengthening accountability

229) Has been fashionable in recent years, certainly among ministers, to disparage pressure groups as vested interests whose sole aim is to subvert the democratic process and undermine public interest.
Pressure groups not entirely self-interested.
Interest groups do raise matters of concern to the wider public, while cause groups provide an important channel for ppl w common preferences and shared values regarding society as a whole.

Modern democracy cannot function properly w/o pressure groups

230) pressure group expertise = valuable to policy-makers

Question 13

Frost, B, The Tactics of Pressure: A critical review of six British pressure groups (1975)

Answer 13

Colman, A., The Psychology of Influence

12) pressure group in Britain usually finds itself confronted by a more or less principled govt policy on the issue at hand, and its task is to influence decision-makers to change that policy.
Usually involves inducing them either to modify the principles which guide their existing policy, or modify the policy in spite of the principles, e.g. in the interests of expediency. Latter, which is more frequently successful, is available only to (13) groups which possess some measure of power over the govt e.g. through control over resources which the govt depends upon

14) nature of credibility - some evd to suggest arguments more important than who delivers them. Import of trustworthiness and expertness.
15) whereas one-sided messages are, under certain specified conditions, more effective than two-sided messages, two-sided (16) presentations induce greater resistance to counter-propaganda in the audience
18) most effective for attitude-change = face-to-face communication, then films, TV, radio, and printed word, in descending order.
19) Minority of ppl, persuaded by mass media, are able to influence large nums of friends + fams + acquaintances
24) Pressure groups which do not command the necessary resources to bargain directly, which is the case w most promotional or cause groups, are bound to restrict their efforts to attempts at persuasion

Young, J., The Aid Lobby:

-1970 election campaign, lack of success bc politicians and mass media simply not interested - other issues seemed more topical/ pertinent

Grey, A., Homosexual Law Reform:

Himself an activist

45) Guided by advice of parliamentary sponsors. Supplying of info, research into points of detail. Keeping of lists of MPs who supported. Combo of assiduous but quiet rallying of support w/in Parliament by the Bill’s sponsors there, assisted by our office acting as ‘general staff’ proved singularly effective
55) the more intensive a pressure group is, the more it experiences a sensation of pressures being focused in on itself - from friends as well as opponents

Frost, B., and Henderson, I., Shelter:

58) Beginning of 1966 public of Britain was already beginning to respond to housing problems, partly as a result of the Notting Hill Housing Trust’s large-scale, horrific advertising in the national papers
61) holding of public meetings

McCallum, B., The Biafra Lobby:

72) Ultimately the Biafra lobby failed in its political purpose to change the attitude of the British Govt, but by publicly raising the affair and forcing debate they alerted the public, which was then kept informed by the mass media until the end of the war

Frost, B., The Disablement Income Group:

82) Disabled ppl protest in Trafalgar Square 1967.
DIG = effective in its early days because of the driving power and determination of Megan Du Boisson, herself the victim of Multiple Sclerosis.
Started w letter to the Guardian asking ppl if interested in putting pressure where it mattered to make sure needs of the disabled were met more adequately

84) Letters pouring in from disabled ppl which revealed appalling situation of need
DIG - clear goals, and disablement = cross-party issue.
DIG had support of an All-Pary Comte on Disablement

85) Mr Richard Crossman at Second Reading of the National Superannuation and Social Insurance Bill, 1970:
We have all been deeply moved by the lives as well as the words of ppl like Anne Armstrong and Megan Du Booisson. Without them it may well be that clause 17 would never have found its place in the Bill.

Secretary of State Sir Keith Joseph - paid tribute to Boisson in Parl

86) great achievements of DIG
DIG brilliantly points way to handle the type of problem increasingly obvs in a large bureaucratic soc - ‘half-way’ problems. Some issues too big to be dealt w by individuals, or small groups, yet not so massive as to push themselves to the forefront of domestic politics.
For their alleviation they need a well organised, clearly informed pressure group before effective change can be seen.
Systematic publicity.
Well documented material for professional ppl involved in the world of social services.
Material for the disabled to help them understand (87) their rights.
Programmes on the mass media and in newspapers e.g. ‘the price of pain’, BBC

Membership in 1970 was about 6500, mostly disabled. 5000 of these belonged to one or other local branch

Du Boisson was invited by Sir Keith Joseph to become the Attendance Allowance Board’s first lay member.
DIG work recognised by PM Edward Heath.

88) Maybe only half the battle is won - the actual amount of money allowed is small. Much remains to be done.
DIG proposes National Disability Income, subject to tax, for total loss of working capacity, with a reduced rate of benefit when the loss is substantial but not total.
Also, Disability Expense Allowance, tax-free.
Full disability income wld be the same is the normal retirement pension

89) DIG now becoming a movement
90) DIG never makes mistake of spurning popular newspapers and journals, as do many w strong social conscience

DIG realises pressure groups must know their facts. These have to be made known and presented in places of power in an attractive, compelling manner

DIG has originality - articulated the psychological problems of ppl who were discriminated against because of their physical disability

Appeal of DIG based on justice, but also logic, reason and cogency. Has gained a reputation among parliamentarians and civil servants for doing its background reading.

Profound feel for the consumer.

Wallace, W., The Pressure group Phenomenon:

92) Protestant religion creating sense of social conscience
93) Extension of the franchise and growth of mass education - opportunities for mass movements
96) Politicians commonly desire to be popular, and ministerial departments, like most large organisations, to avoid trouble; both desires, in a relatively free and open political system, push them towards co-operation with organised groups
97) News media look to groups as a significant source of information. Any pressure group which manages to gain a modicum of publicity is therefore likely to find itself besieged with demands for literature and information, e.g. DIG
100) Pressure group with the best chance of achieving its aims is the organisation with a clear and limited objective which already commands some sympathy within Govt and in Parliament, and which it is within the power of the Govt to grant

DIG cld anticipate public sympathy for its objectives if public attention cld successfully be caught and its case put across. Politicians do not like to appear hard-faced or unfeeling; it could therefore expect, within a climate of opinion which already expected the Govt to look after disadvantaged groups, to meet at most w arguments that money or resources cld not yet be found, that ‘the time is not yet ripe’, in opposition to its demands.
101) more difficult problems for such groups follow the achievement of their short-term objective, in making the transition from a limited campaign to a more general concern with the welfare of those they are concerned to help.
Difficulty of maintaining enthusiasm and commitment of supporters past the initial campaigning stage and into the longer haul of maintaining public and political support for half-achieved objectives

103) Rise in prestige of the Lords. Lords debate may oft attract less attention in the Press than a Commons debate, but the looser procedure of the Lords makes one easier to obtain
In some respects, may now be fair to say that the HoL is generally more favourable to progressive legislation than the HoC

104) most difficult targets for group activity are the ‘background’ elements of bringing pressure to bear on the govt - the media and the public themselves.
Media’s tendency to reduce issues to personalities. Focus of TV on colourful or violent action at the expense (or so it is claimed) of more significant but less exciting news.

Media - cheapest way of getting media across.
Politicians easily mistake Press agitation for aroused public opinion - ‘good Press’ therefore (105) carries a group’s message to front of govt and parliamentary attent.
Need for articulate spokesmen who can ‘rep’ the cause.

Govts are sensitive to what they regard as the climate of opinion on particular issues in assessing what policy to adopt or what decision to take.
Shock adverts but longer-term educational campaign.

106) Respectability and reputation are valuable weapons for a group with not too radical aims.
Body of respectable MPs, preferably cross-party = invaluable weapon.
Circulation of material to MPs needs to be reinforced by personal contacts with sympathetic mems in order to be effective

108) What may be new is not so much the tactics of these groups, which are mostly well tried and familiar, as the extent to which the activities have in the past ten years come to invade what had previously been regarded as the province of the political parties - fall in polit party membership.
Oft not the wealthiest groups which are most successful.
Organised groups mostly middle-class

Question 14

Pym, B., Pressure Groups and the Permissive Society (1974)

Answer 14

22) discipline and modesty = moral climate in immediate postwar period
41) conservative pressure groups allied with Conservative forces within Parliament were successful in preserving the status quo (e.g. in abortion law reform)

53) success of in-groups in post-war period.
Radical groups no threat

59) Pressure groups of 1950s eschewed direct action because they did not wish to break the law. Respected the law in general

60) Most of the radical groups might be described as single-issue law reform groups.
Of recent yrs protests have become increasingly dramatic - sit-downs and break-ins of the Comte of One Hundred

88) Difficult to generalise about the effect of pressure groups on Parliament

114) pressure groups important in pushing through legislation which ushered in the permissive society.
However, there are many influences other than direct intervention of groups which affect passage of legislation - parliamentary timetable, individual MP, disposition of govt and ruling party.
Pressure-group activity affects these things too, but indirectly and through a long-range viewfinder

128) Pressure groups = significant factor in setting the scene for reformist legislation, but progressive liberalism of C of E also important contributor
129) During 1950s the radical groups directed their campaigns 1. towards the public, through leaflets and meetings, and 2. (130) towards Parliament, by lobbying MPs and the govt through pamphlets, letters, petitions and deputations

130) 1. Campaigns by radical groups have no hope of success while the govt is hostile
2. even when unsuccessful, they may be performing a useful role in keeping alive support among the opposition
(131) 5. groups can do little to ensure the passage of a contentious Act, which is dependent upon the good offices of the govt
6. groups opposed to reform can do relatively little in the face of a determined govt
7. pressure groups may indirectly influence reform in so far as their ideas inform basic predispositions of the govt

132) Similarity of campaigns.
Public campaign - leaflets, press articles, etc.
More important side of the campaign is pressure put on MPs and the govt

133) Widely argued by political commentators that campaigning directed at non-specific public and in a somewhat hit or miss fashion at Parliament is almost always unsuccessful - e.g. struggles of the CND campaign and the legalisation of ‘pot’ movement.
May not be that govts are actively hostile on these matters, but they simply give them indefinitely low priority.

Poss that majority of campaigns end in failure.
Failure = go unrecorded/ neglected by history.

141) Many and various efforts of groups to influence Bills once they have bene published by pressing matters with the sponsors and inducing sympathetic MPs to move amendments
146) Powers of capitalism tend to dominate on economic matters
147) Campaigning groups saw much of what they had asked for translated into law by the Labour administration of the latter 1960s
163) If groups are to become more effective in their approaches to Parliament, their legitimacy must be improved

Question 15

Smith, S., Sick and Tired of Being Sick and Tired: Black Women’s Health Activism in America, 1890-1950 (1995)

Answer 15

Doesn’t rly focus on patient activism (?) more activism of ppl on behalf of overall hlth of their racial community, etc

1) Black hlth activism in the US emerged at a time when the US welfare state was expanding and black rights were decreasing - 1890 to 1950.
Group w little influence on govt attmpting to affect public policy. This difficult. But black activists struggled to draw federal attention to black hlth issues.

Men led, women organized.

3) continuity in black freedom movement across time
8) Ideas about racial difference and black inferiority
10) WW1, officials continued to point to racial disparities in hlth as a sign of black inferiority
12) Hlth reform initiative created by African Americans themselves

17) club work
Self-help - efforts of black middle class to help the poor

21) Black doctors supporting establishment of Provident Hospital and Nurses’ Training School. Professional motives.
M-c black women e.g. Fannie Barrier Williams, supported Provident to assist poor women and children and to advance the position of black womanhood

24) Community women’s maintenance of the infrastructure of Provident
30) success of Neighbourhood Union hlth centre. Much of its success due to women’s direct contact w local ppl and their ongoing efforts to involve the community in projects
32) organisational activity of black women campaigning for public welfare
33) educational work of the Tuskegee Institute
37) work, sociologist, use of statistical evd to shock
45) Lobbying to get govt endorsement for National Negro Hlth Week
47) By the late 1920s, National Negro Hlth Week altered, if ever so slightly, the focus of public hlth policy and the practice of public hlth work

57) Supporters of National Negro Hlth Week not only performed social service work when they created hlth programs previously unavailable to most African Americans, they also engaged in political activity to extend black rights when they lobbied local governments and private organizations.
In defending black entitlement to existing public provisions, African Americans challenged the inequality of the racially segregated hlth care system

80) mid-20th C, black hlth movement’s polit strategy gave way to demands for integration
81) Black hlth leaders had hoped to shape federal hlth and welfare policy through appointments of black personnel
82) At local lvl, black community hlth activism 1930s and 40s, oft led by black women, provided a measure of hlth provisions to communities generally neglected by the white hlth establishments
148) Midwives played an important but overlooked historical role as public hlth workers for rural African Americans
166) From beginning, Alpha Kappa Alpha Mississippi Hlth Project leaders felt they were making history and widely publicized the accomplishments of their hlth project. Sent copies of reports on their hlth project to other organizations in the hope that they wld follow suit
168) In the first half of the twentieth century African Americans created their own solutions to black hlth problems

Female hlth professionals were the ones who pioneered grassroots hlth organizing.

169) Hlth reform was a cornerstone of early black civil rights activity.
In an era of legalized segregation, hlth improvement was necessarily tied to the struggle for social change.
Focusing on hlth issues permitted black women to take on v public roles and engage in a little-recognized form of civil rights work

169) As the 1980s war on welfare, civil rights and feminism began to dismantle (170) the gains of the social movements of the 1960s, a self-consciously black women’s (italics) hlth movement emerged. This movement marked shift from black women organizing for their communities to organizing for themselves.
Contemporary black women’s hlth movement asserts that poverty and racism, as well as sexism and homophobia, have contributed to poor hlth status of African Americans
National Black Women’s Hlth Project, HQ in Atlanta has spearheaded the movement.

Revival of National Negro Hlth Week, renamed National Black Hlth Week, in the 1990s.
Group have convinced the National Med Assoc to help them lobby Congress to designate April as African American hlth month

It is clear that hlth care continues to be both a private need and a public concern, enmeshed in the politics of the day

Question 16

Marsh, D. (ed.), Pressure Politics: Interest Groups in Britain (1983)

Answer 16

Marsh, Intro: Interest Groups in Britain: Their access and power

3) economic and ideological interest groups (seem to be same as interest and cause groups respectively)
6) 1970s - drift towards ‘single issue politics’

10) classical pluralist model - power diffuse
11) elite pluralist model - all individuals may not be represented, (12) groups are less open and responsive to their members than the classical pluralists assumed because all organisations tend to be hierarchically run
12) fragmented elitism model

13) veto group model
166) Ryan, M: The Penal Lobby: Influencing Ideology?
179) if the contribution made by pressure groups to the formation of public policy is considered more in ideological than in practical terms, if we ask how they reinforce or challenge prevailing policy paradigms, rather than detailing their influence on this or that specific policy, then a better understanding of the lobby, particularly the role of the so-called ‘less (180) powerful’ groups might be achieved

Real value of less powerful groups in the penal lobby, and why political scientists should bother to consider them, surely lies in their ability to counter such a superfluous, even bland, analysis

Ward, H., The Anti-Nuclear Lobby: An Unequal Struggle?

The anti-nuclear movement has exerted significant power over the agenda of energy politics in Britain and has influenced both mass and elite perceptions of energy questions

McCarthy, M., Child Poverty Action Group: Poor and Powerless?

228) CPAG = hybrid group -displaying at diff times characteristics of sectional and attitude groups
229) CPAG lacks economic leverage. However, ‘pressure’ associated with creation of sense of urgency or ‘atmosphere’, as well as vulgar force. Tactic of ‘trapping’ ppl by what they have said; ‘reminding’ parties of their manifesto; waging of highly media-orientated campaign designed to drive home the ‘urgency’ of a problem - may all be seen to have contributed to atmosphere of pressure.

Hybrid role in terms of insider or outsider group - (230) this shifted over time. Shift from more insider focus to more radical outsider focus. More publicity-style approach - PUBLICITY-STYLE APPROACH AS SIGN OF OUTSIDER STATUS?

231) difficulty of holding attention once it has been gained

Question 17

Gerteis, J., Class and the Colour Line: Interracial Class Coalition in the Knights of Labor and the Populist Movement (2007)

Answer 17

Vii) Knights of Labor and the Populists:

1. Both inclusive and exclusive at the same time
2. Movements' republican emph on civic virtue offered a basis for cross-race organizing, but also provided constraints
3. Viii)Interests varied across local contexts, and they were continually renegotiated over time

I am sociologist. Must avoid cavalier attitude towards marking boundaries between sociology and history

10) Boundaries = both inclusive and exclusive at once
13) Enthusiasm for interracial alliances = both strategic and genuine

	74) For the Knights, connection between class and race made through three separate movement-level narratives.
Control over what might be called 'civic virtue ' was a central feature in each of the narratives, however. This involved not only formal legal autonomy, but also the capacity and appreciation for maintaining republican institutions. This was essentially the lens through which the movement read the meaning of race and ethnicity.
In Knights, blacks came to be seen sa sharing in view civic virtue = central to class struggle. Anticitizens became the new immigrants - partic the Chinese and southern Europeans outside the democratic system and caught at bottom of economic system

85) One of the basic points of recent scholarship on social movements has been that resources matter in the emergence of social movements. In Richmond, the network of black churches, secret societies, and mutual benefit organizations that preexisted the Knights of Labor formed a grounding upon which (86) that organization grew. The network provided a pool of potential recruits who were already mobilized and familiar with the organizational form of the movement as well as with more tangible resources

Jackson - web of civic assocs that supported the community also supported the later black organizing under the Knights of Labor

100) Richmond's black community life influenced the ability of black workers to organize and the reception that white workers gave to them. The community provided resources and experiences that supported organizing.  The organization of the black community also influenced the view of white Knights. The prominent existence of black unions, self-help socs, and other organizations made the prospect of class alliance seem feasible in practice to white workers, even while they distanced themselves from the issue of social equality. By turning community resources into organizational strength, Richmond's black Knights were able to maintain some independence both from hostile employers and white Knights

101) Interracial activism in Richmond eventually crumbled. Partic important in its demise were the divisive issues of 'social equality' and political interest

149) While the same republican concern for civic autonomy and social standing drove the Populist narratives, there were distinctly different narratives linking race to class interest in these organizations.
1. Foreign economic competitors - threat from Jews and English aristocrats 150) 2. trope of money slaves and party slaves to describe the condition the populists feared they would fall into
3. Affirmed import of interracial organizing on basis of economic and political equality of the producers, even as it drew the color line more sharply in terms of social equality
4. Interracial political competition

This reconstruction of the movement narratives necessarily steps out of historical time. Following chapters trace this interaction in Virginia and Georgia, where the negotiation of interests can be seen more clearly

174) Georgia Populists Shift into politics brought many of the racial issues to the fore.Experience of repeated losses in the course of organizing gradually changed the Populists' construction of racial interests. Started as yes on political and economic equality White farmers in Georgia became less secure about their future, then as Democratic charges of 'negro supremacy' took hold, emph shifted to 'no on social equality'

198) Scope of farmers' movements = limited in Virginia. Basic cause = from the end of the campaign of 1892 through the state elections of 1893, relations between white Populists and black Republicans soured as both sides came to view potential coalition with suspicion
199) Both sides supported the coalition for strategic rather than altruistic reasons

	201) As Knights of Labor and the Southern Populist movements waned, so did the poss of the broad realignment of the joint boundaries of race and class that they symbolized.
Did these movements provide real alternatives to the dominant structure of race/ class relations, or were they simply curious exceptions that proved the general rule?

202) Most important effect of the movements' collapse was the way that both black and white southerners re-read the meaning of past attempts to transcend the color line and the prospects of future efforts: lesson came to be that such coalitions were fruitless
203) Despite eventual collapse of the republican movement, the legacy of potential for radical mobilization along lines of class lived on and provided a bridge to later forms of mobilization. As yet, no similar consensus about racial legacy of the movements.  My aim in this book has been to provide more satisfying set of answers that recognize both the sources and the limits of the possibilities they offered.
204) Confusion over racial legacy of the movements = largely a function of way in which the alternatives have been posed. Not how racist/ racially egalitarian were they - boundaries of these movements were both inclusive and exclusive in equal measure. Both racist and sincere in efforts to build coalitions across the colour line

Connection between race and class boundaries in the movement narratives has been examined

205) More recent work has tended to view class as a malleable boundary that has taken different forms in different eras

The republican class language so deeply knit into these movements had implications for race as well.
While earlier manifestations of the republican idiom had been mobilized for the defense of a white republic, the same language suggested broader possibilities at a later moment.
The narratives did not extend to everyone equally however.
For the Knights, one cultural narrative linked black workers to an ‘interracial organizing’ frame and in doing so largely presumed common class position and common cause between white and black working people.
Another tied new immigrants to a v different frame about competition. Chinese, Italian, Hungarian immigrant workers were vehemently rejected

	208) Problem of 'status distinctions' has been consistent theme. Oft expressed by the movements as a concern over 'social equality'
Adolph Reed Jr - (209) race and class connected as dual parts of single system of power

Status dimension = both source of and limitation for interracial project
210) Narratives set up test of republican worthiness based on civic model - coherent community life of blacks in Richmond so more likely to be seen in line with movement’s aims than say, Atlanta, where black community less well-organized.

Extension of demand for equality in economic and political matters for white workers and farmers was extended to become demand for equality between the races - equal status of all ‘producers’.
Yet status concerns also pressed white Southerners to cling to social distinctions.
Social equality was widely rejected because it was assoc w a loss of status in the personal, local interactions that mattered to white Knights and Populists

Question 18

Miller, C., Lobbying: Understanding and Influencing the Corridors of Power (2nd ed, 1990)

Answer 18

vii) Author = professional consultant on public policy and legislative dealings with government
xi) This book not academic analysis, it is a user’s manual
xii) we are all educated to regard Parliament as the most important part of our constitutional structure. But should consider it w/o romantic focus.

Over-emphd role of lobbying.
Contact w Govt, we have been led to believe, is essentially a matter of pressure

xiv) Need to Know - monitoring govt activity, making sure you know what has happened or knowing in advance of likely policy planning or actions that may affect your interests

Need to Inform - to know and be known by those officials who cld formulate, consider, scrutinize, amend or endorce policies, and to estab relationship of trust that makes Govt willing to use individs, firms or trade assocs as source of info it needs to produce representative polities, whether public or commercial

Need to negotiate - to make representations to the components of the power structure where there is a need to change policy. May be necess to ally outside influence - media and public or associated groups’ opinion - for one’s point to get across.
Need to Lobby - generally only required in the case of pressure groups

xv) info in Lobbying = up-to-date on 1 Oct 1989

45) mems of HoL have fewer ministerial positions avail to them, so are less inclined to vote passively bc of the promise of patronage.
The Lords’ traditional independence can make it an irritant to the Govt

57) Wherever possible, if issues can be decided other than by legislative means, govt will do so.
Making of law is an expensive, difficult and time-consuming business.
It is also increasingly pressured. While the proportion of parliamentary time spent on legislation has remained level at around 50%, the volume of primary legislation has increased from around 200 pages in 1900 to over 2000 pages a year today

91) Ministers rely on their officials to provide them with the information they need to make decisions.
Ministers are overburdened

93) Outsiders must recognize frequent need for persistence if even the strongest case for change is to be accepted. Officials oft moved every 3-4 yrs from one job to another. This may mean real expertise in relevant policy area is not acquired, w the result that they come to rely heavily on their departmental files. This militates against creative thinking and in favour of a line of least resistance on many problems

Many officials become biased against those who base their advocacy to Govt on MP-geared pressure on Ministers without consulting those to whom those Ministers would normally turn for advice

94) The top 5 grades of officials are in the main staffed by very intelligent people. However, only a v small minority has had experience in the areas they sponsor. Their work is therefore approached in the same way as a barrister’s in that complex issues must be mastered on the basis of the brief they receive. As a result, officials are oft only as good as the information they get and outsiders should not be surprised if there are occasional gaps in understanding of industries or individual problems.

Officials always stress in dealing w outsiders that they can’t make decisions themselves - they can only advise the Minister. While this is technically correct, the great proportion of administrative judgements made and communicated to the public are by officials who have been v well trained in the largely fictional convention of Ministerial Responsibility

101) MPs are badly services - many share a secretary. A significant proportion have no research assistance

Rise in career politicians means danger:

102) 1. loyalty to Party will prevail regardless of individual conscience or constituency duty

MPs = increasingly resentful of modern lobbying:
- much of it is directed at them when it should be aimed at Whitehall

Status of MPs now exceeds their influence

103) MPs need publicity

MPs can be effective mobilizers of support

In general, individual MPs vote against their Party bc:

1. strong constituency reason for doing so, discussed by the Whips
2. it is expression of dissatisfaction if their Party has failed to communicate with them
3. It is a signal to their Party’s leadership that its policies are unpopular

111) Lords Sci and Tech Comte
116) Adjournment Debates

Ten-Minute Rule Bills. 10 minute speech after Question Time on Tuesdays and Wednesdays. This device almost always used to publicize an issue without any hope of the Bill proceeding, although some Ten-Minute Rule Bills are considered to be generally worthy and receive the essential support of the (117) Govt Whips, in whcih case they may become law w/o even being debated. Only about 15 Acts have been passed in this way since the War

Early Day Motions:

• publicity devices. Sponsors - usually 6 backbenchers but sometimes only one or two - only intend that as many MPs as poss will sign them as indication to the Govt of parliamentary interest in an issue
• they are in practice never debated. Pose no threat

118-9) Private Members’ Bills:

• the odds against a Private Members’ Bill becoming an Act are great: if it offends Govt policy, the Whips will ensure that a majority oppose it; opposing interests may try to debate the previous item of business at great length to deny parliamentary time to the Bill. Since Private Members’ Bills are only debated on Fridays, when most MPs normally travel to their constituencies, finding support is not easy
  121) Roughly 1/8 Private Mems’ Bill becomes law

122) Common mistake - Act Now, Think Later syndrome - if you do not know how Govt will react to your case before you advocate it, you have not worked hard enough

123) Those who consistently succeed in their dealings with Govt are those who understand the dynamics of decision making on public policy issues
124) Primary rule of working w Govt:
- monitor first
- talk second
- argue third
- apply pressure last

127) important to develop contacts and cultivate those who already have them
Timing is crucial - correct time in policy process. Correct time of day/ week to contact MPs, etc

129) The amount of noise made by advocates is usually in inverse proportion to the strength of their case or their abilities. Admits - numerous exceptiosn to illustrate the importance of battering Govt to entertain views widely accepted by the public (e.g. campaigns for abortion law reform 1960s and lead-free petrol 1981-4).
The best-selling work is persuasive rather than coercive

130) Only experience will advise users when to employ high profile pressure to make their point
131) Working the system is not just a matter of image-building. Public relations is important as a reinforcement, or even as a lead technique where the mobilization of public opinion or promotion of an organization’s image is important to advocating a case; but PR methods are irrelevant to the need to know; to the technique of advocacy; to an understanding of the procedures and processes of decision-making; or to the core of successful commercial negotiation w Govt. Public relations = strong peripheral device
138) How to get info to monitor activities/ views of govt (could use this to find out relevant officials whom I cld contact for interview)
173) In mtg w Minister, should aim to leave them with two or three points that give clear impression of you and your interests. Question them, ask them to comment on your views - can action be taken?
178) Well-presented written information coupled with oral submissions are the two keys to successful advocacy to Govt
188) Producing brief for minister
190) Think of the questions most of interest to a Minister in judging your case
191) To secure the greatest poss acceptance of your case, you may have to be prepared to compromise between views you may hold strongly and those to which Govt will be most susceptible
192) Necessary to think carefully about the tone of your case. The reasons for the views you advocate are less important than the reasons your targets want to hear

193) Methods of changing the law:
1. party and ministerial pressure
2. pressure from officials
3. pressure from MPs and Peers

194) Must assess what is wrong w current policy/ legislation and clearly lay out alternatives for change. Must think carefully about advantages and pitfalls.
Must be able to demonstrate to decision-makers the Civil Service skill of having assessed all possible alternative remedies to an identified problem, evaluated merits and tested them acc to above criteria to produce an answer as close to being incontrovertible as possible

199) Power of galvanizing support from influential bodies

The advantages of media coverage, if your case is sufficiently persuasive, is that the arguments are seen by a great number of potential supporters and are advocated by an influential medium rather than by an obviously interested party - you

200) Pressure to accept new ideas oft comes from the media
201) Establishing the policies that lead to legislation is a long-term process requiring sustained energy

Must persuade backbench and All-Party comtes to put your case to Ministers.

One task = reassure Ministers and the sources on which they may rely for corroboration that contrary views to your own can be overridden in the public interest.

206) There are few established procedures and precedents for working w Govt

Question 19

Leopold, E., A Darker Ribbon: Breast Cancer, Women, and Their Doctors in the Twentieth Century (1999)

Answer 19

2) In the case of breast cancer, the void in the literature stands in stark contrast to the extremely visible and voluble presence of the disease in contemp culture. Breast cancer may not yet have a well-documented past but it has vibrant present. Cause has been taken up by celebrities. Pink ribbons on chests of thousands of Americans.
There is hardly a community in the US that has not participated directly in some fund-raising or consciousness-raising event organized by groups of women at the local, regional, national lvl.
At the heart of this success are the two million American women who live with breast cancer today (including myself).
Disease no longer med emergency - chronic condition. Interest intense but no longer so urgent

16) Women have mobilized in the thousands in breast cancer coalitions acress the country to increase the lvl of funding at the national lvl.
Burden still falls largely on their shoulders.
Every one of the 180,000 American women diagnosed each yr is still individually responsible for getting herself screened, biopsied, treated and monitored.

17) Little sense that society as a whole has thrown its weight behind the eradication of the disease, as it did in the 1950s in the national assault on polio. Instead, there is, as there has always been, pressure on women themselves to play more active role in cancer control
33) Regressive sexual politics of breast cancer
43) Doctors innocent of own predjudices. Patronizing, infantilizing
85) Two chapters, breast cancer correspondence
150) Reading up on disease, becoming more expert in order to prepare

186) Battle for control of the breast
Pitted interests of docs against interests of husbands. Examining position of woman, in the middle

192) Tactic of focusing on specific cases that were exceptional or sensational enough to be newsworthy (in absence of national TV news networks) in women’s hlth movement
193) Birth control and abortion, battles taken to the supreme court
213) no infrastructure of support or docs willing to support in case of first women to speak up about breast cancer experience
214) Denial of the disease ingrained in the culture for v long time
215) First-person cancer narratives written by women began to appear in popular magazines in the late 1930s. These switched the perspective from the impersonal and sometimes hectoring tone of male authority to more intimate voice of personal experience
222) Full disclosures of the 1970s
224) Campion 1971, refused to sign consent form permitting her surgeon to carry out an immediate radical mastectomy if biopsy he was to perform proved to be malignant. Surgeon’s negative and patronising response - ‘stubborn woman’. She wrote about experience in McCall’s
225) growing underground lit disowned by the med establishment but eagerly consumed by readers
130) 1970s - regular, unsensational news stories helped to build up an alternative view of the breast
231) In early days of public discussion, press served as a critical intermediary between the closed world of medical science on the one hand and the equally sequestered world of breast cancer patients it was deemed to serve on the other. But the two worlds still remained at arm’s length from each other
232) Betty Ford’s breast cancer, Oct 1974 - front page, much attention

233) Kushner, breast cancer activist. Her work = heady brew of personal experience mixed with wide-ranging medical and sociological data.
Kushner - took aim at the Halstead radical

For perhaps 1st time, Kushner made it clear that the more a woman herself understood about the disease before a diagnosis, the less traumatic her experience of illness wld be.
Behind the voices of the earlier breast cancer survivors was the voice of the med establishment.

234) Trying to break up standard narrative of breast cancer expeirence.

Used reconstruction of her own ordeal to expose, at every
turn, the entrenched medical practices that had remained unchallenged and unproven for more than half a century

235) Accused surgeons of being overeager to operate

236) Kushner’s book-length account of own experience carried a medical seal of approval in its forward, written by her own doctor.
Her doc distances himself to some degree with her assessments

Some fierce defences of the prerogative of male surgeons

241) Rise in TV renditions of breast cancer experiences. In adopting the perspective of the early breast cancer testaments, television certainly helped to create and (242) Then reinforce national awareness of breast cancer as a personal narrative
243) perception of breast cancer after Betty Ford was indelibly altered
254) Every generation is characterized by its own pattern of disease treatment

255) The rise of the self-healing movements of the 1980s and 90s is evident in these memoirs in their almost ritualistic patterns of self-interrogation and sometimes self-incrimination. The popularity of books by Bernie Siegel and Deepak Chopra attest to our loss of faith in collective responsibility
270) Grass-roots organizations began to spring up in the late 1980s
271) Coaitions e.g. National Breast Cancer Coalition
Activity coordinated by the NBCC has been at the heart of the sixfold increase in breast cancer research funding, rising from less than $90 million before the coalition got underway to more than $600 million in 1999

For the most part, the movement continues to rely upon the goodwill and generosity of unpaid women supporters

274) bc the breast cancer movement has achieved so much, we forget how v young it is
282) Each of the women caught up in this struggle has expressed an attitude toward the sacrifice of her own life that has, bit by bit, moved us forward, toward a more uncompromising and unsentimental view of disease

Question 20

Traudt, P., Media, Audiences, Effects: An Introduction to the Study of Media Content and Audience Analysis (2005)

Answer 20

5) Defines mass media as the range of print, electronic and filmic opportunities (6) supported by multiple platforms for presentation and consumption

Mass communication is the process by which individual audience mems engage and give meaning to media contents

8) importance of function of other communication sphere e.g. talking, recommending something to watch/ read
22) Common criticism of mass media effects research is that some researchers assume cause-and-effect relationships between media content and audience attitudes or behavioural changes without first systematically documenting what is in print, what is broadcast over the air, what is piped through cample or high-speed internet connection
24) Practice of coding is important component of content analytic studies. Coding is the

Question 21

Michele L. Crossley, Nick Crossley, ‘Patient’ voices, social movements and the habitus; how
psychiatric survivors ‘speak out’, Social Science & Medicine 52 (2001) 1477–1489

Answer 21

1484) The idea that personal ‘voices’ are not merely idiosyncratic but form part of a larger group’s collective experiences as a whole leads to an increasing sense of confidence in that voice. This, in turn, results in an increasing challenge to the ‘voice’ of authority, the perspective that has so far remained inviolate and largely unquestioned with regard to its ability and ‘right’ to impose a definitive version of reality

Placing the words ‘label’, ‘treatment’ and ‘well again’ in scare quotes, Ross questions the validity and integrity of the dominant, psychiatric version of reality that has been imposed on her experiences.

1485) The increasing sense of the validity of personal experiences leads to a new voice of demand.

It is this understanding of oppression as a collective,
system-based phenomenon, which leads to an intrinsic
sense of ‘right’ and ‘entitlement’. If ‘the system’ cannot
be trusted to treat ‘us’ in the manner ‘we’ deserve, then
we have to ‘fight’ that system

What can be seen in Speaking is, in short, the
emergence of a whole new critical discourse on
psychiatry; that is, a collective and shared set of
typifications and rhetorical strategies which function to
challenge and contest psychiatric authority

It is important to pause briefly to reflect upon the
oppositional nature of the habitus we are investigating
here. We noted in our introduction that the concept of
habitus is often implicated in accounts of the preservation
or reproduction of the status quo. What we have
here, by contrast, is a habitus which generates
projects of resistance

1486) Alongside the discourse of activism, we find in SOM a
whole ‘new’ language of ‘self’: a therapeutic language of
‘healing’ and ‘recovery’. This is a discourse of ‘inner
work’ (p. 160), in which people speak of ‘unblocking
creativity’, ‘reconnecting’ with ‘my inner world’ (p. 144),
‘invading my process’ (p. 161) and ‘emotional education’

Attention to this world is encouraged by
‘alternative approaches’ such as homeopathy, herbalism,
counselling, naturopathy, poetry, spiritual healing,
shamanism, meditation, tai-chi, relaxation, artistic
creativity, gardening and chopping wood

These approaches enable individuals to reach ‘deep parts’ of
themselves and to ‘awaken’ ‘spiritual dimensions

In this section, alternative approaches are depicted as
helping people to feel ‘whole’ again

As with the other aspects of voice discussed, this
therapeutic narrative indicates a new way of relating to
self and a new set of schemas and vocabulary for so
doing. No contributor to The Plea could have discovered
a ‘hole’ in their ‘aura’ because to do so
presupposes specific schemas of perception, imagination
and speech which simply were not available at the time

The above analysis has depicted a shift in ‘the voice’
of ‘the mental ill’. It has identified a shift from privatised
and particularised complaints about specific experiences
of mental health towards a sense of collective identity
and a generalised critique of the mental health system.
Moreover, it has identified the emergence of a therapeutic
repertoire within this voice, which elaborates
and explores the nature of the ‘inner experience’ of
distress.

As a first step in making sense of these changes we
might invoke the concept of ‘habitus’. In its
phenomenological formulation, particularly in the
work of Husserl (1973, 1989, 1991), the concept
of the ‘habitus’ denotes the various ‘habits’ of perception
and conception which shape our experience of both
self and world, including the typifications which give
form to our experiences and the ‘recipe knowledge’
(Schutz, 1972) we deploy to turn such experiences into
stories which will be convincing for both self and other.
Bourdieu (1992a), in his version of this concept, captures
this when he argues that habitus are ‘structuring
structures’. But he adds that they are equally ‘structured
structures’; that is, structures which are structured from
outside and whose structuration requires explanation.

issue of audiences. The editors of The Plea, we noted, anticipated an unsympathetic and even hostile reception

1487) If the contributors
to SOM are able to speak without apology or
anonymity, in their own voice and without the
authorisation of experts, it is only because their
audience, the ‘generalised other’ whom they must
address, has changed too

Voices change because
audiences are prepared to hear them in a new way.

why have audiences changed?

obvious and central factor in this respect is the
activity of social movements, specifically the antipsychiatry
and survivor movements

Social movements can and do transform
‘voices’ and the habitus which generate them in at
least two respects. Firstly, as Blumer (1969) indicates,
they are often constituted, at least in the first instance,
through critical and ‘excited’ forms of discourse and
interaction, in which taken-for-granted assumptions are
brought to the surface and questioned, and many of the
usual inhibitions of discourse are removed. This process
facilitates a breaking down of certain traditional habits
of thought and perception and a building up of new
forms of ‘resistance habitus’.

mid-1980s. The label of ‘mental
patient’ was problematised within the movement, leading
groups such as PROMPT to change their name (they
became the Campaign Against Psychiatric Oppression
} CAPO). And new groups, such as Survivors Speak
Out (SSO), introduced a different language into the
movement (Crossley, 1999c).

The result of the fight is
a reformed habitus which goes at least some of the way
to reforming the voice of the user

Voice is a function of the
authority invested in it and the willingness to listen that
it is able to command. To change a voice, therefore,
social movements must equally change both their
audience and the context of ‘symbolic power’ (Bourdieu,
1992b) within which that voice is heard. They must
transform the stereotypes through which they are
perceived and which shape the manner in which they
are heard, and they must address those institutional
structures which systematically devalue their voice

The anti-psychiatry movement, at its height, for example, was able to command a great deal of publicity and interest, at least
amongst the educated, and it both involved and sparked
a great number of cultural projects, including plays
and novels, which sought to bring the perspective of
those on the receiving end of psychiatry into focus (Crossley, 1998).

in conjunction with civil rights
groups, they have sought both to change the public
image of mental illness through media lobbying and
campaigning, and to establish, both locally and nationally,
a right to consultation and advocacy for mental
health patients within the mental health field itself

As we saw in SOM, other movements such as feminism
and black liberation movements have played an
important role too, both by offering their own
critique of mental health services, and thereby infiltrating
and shaping the mental health movements from
within, and by acting as role models for the mental
health movements. Moreover, both anti-psychiatry and
the mental health users movement emerged out of the
broader ‘cycle of contention’ and ‘counter-culture’ of the
1960s, contributing to that general cycle and simultaneously
drawing impetus and legitimacy from it (Crossley,
1998, 1999a). They belong to a broader growth of
‘new social movements’ in society and cannot be fully
explained or understood independently of that movement
cluster.

1488) fields can
and have exerted their own independent effect upon the
voice of those within them. In particular the rise of an
ethos of consumerism within the British health field has
had a strong impact. The contract for general practitioners
(DOH, 1989b), Working for Patients white paper
(DOH, 1989a) and Patient’s Charter (DOH, 1991) for
instance, all espoused principles of consumerism,
emphasising the ‘purchasing power’ of the patient and
thus repositioning patients as active and discerning
customers of medical services. Under the ‘internal
market’, furthermore, providers of services (NHS
Trusts, voluntary and private sector agencies) have been
forced to rationalise their activities in a manner which
‘facilitates the development of services that meet the
needs of users in more sensitive and appropriate ways’

has been argued
that the ‘restructuring process’ has increased the
importance of the ‘lay voice’ and ‘opened up possibilities
for developing models that are more sensitive to the
varied needs of NHS users’ (Doyal, 1998, p. 12).

these changes in health care policy are themselves
closely interwoven with further transformations, specifically
in the political and economic fields } what
Bourdieu (1996) refers to as the ‘field of power’. They
reflect the emergence of yet another social movement,
the ‘new right’, who were able to achieve dominance in
the late 1970s and early 1980s as a consequence of the
crisis in the post-war welfare consensus.

In challenging these aspects of medical practice from a
position of power, and championing the voice of service
users, albeit qua ‘consumers’, new right health policies
have created a space for and even encouraged the
growth of a user voice.

A further important change in the mental health field,
related to the dislodging of medical hegemony therein
and relevant to our analysis, concerns the proliferation
and growth of the psychotherapies and the self-help
industry (Rose, 1989, Craib, 1994). These new entrepreneurs
are now arguably established members of the
mental field and, by definition therefore, part of the
mental health ‘establishment’. Their own professionally
motivated challenges to medical monopoly and their
attempts to woo the potential user market have had the
(often) unintended consequence of feeding in to the
reconfiguration of habitus pioneered by the antipsychiatry
and user movements

transformations illustrate the way in which the
‘voices’ of mental patients or users constitute a social,
historical and political construct. The paper has also
been concerned to put forward an explanation which
accounts for this transformation of voice. On one level,
it has been argued that the formulation of voice remains
dependent on specific schemas of habitus which shape it
in various ways. Simultaneously, however, it depends on
the existence of audiences and relations of symbolic
power which allow it to be heard.

1489) conclusion is inevitably dialectical: the ‘voice’ of users is
structured by historically specific habits or habitus but
those habits are, in turn, sediments of prior struggles
from which they have emerged

Question 22

Crossley, N., How Social Movements Move: From First to Second Wave Developments in the UK Field of Psychiatric Contention, Social Movement Studies, 4:1, 21-48 (2005)

Answer 22

22) social movements involve a variety of forms of know-how, dispositions and (perceptual, conceptual, action and identity related) schemas, what we might collectively call a movement habitus, and that this habitus too moves within a movement. It moves, or aspects of it move, between activists; particularly between experienced/established activists who have acquired and/or
23) co-generated it in their praxis, and who embody it in their participation, and neophytes who acquire it, or aspects of it, by way of their interaction with these more experienced activists and the socializing effects of those interactions. Experienced activists pass on the know-how necessary to mobilize ‘repertoires of contention’ (Tilly, 1995; Crossley, 2002b) and taken-for-granted knowledge of the history, heroes, demons and martyrs of their cause. They pass on the ‘vocabularies of motive’2 (Mills, 1974) which animate their struggle, teaching neophytes new ways of looking at and thinking about issues, inculcating an ethos and encouraging broader lifestyle changes. Finally, they extend the bonds of solidarity and trust, the esprit de corps (Blumer, 1969), which binds activists into the movement or some part of it. In this way the neophyte acquires the dispositions and schemas necessary to the continuation and extension of the movement, a habitus which both motivates and enables them to partake in its struggle
, in this way the habitus generative of the movement ‘moves’ into a widening network. The ‘movement’ of movements, in this sense, is a movement through both time and space. It involves both the spatial diffusion of the dispositions/schemas generative of the movement into ever wider social circles and their reproduction across time, as new generations of activists pick up the mantle from older generations

Schemas and dispositions are subject to continual change, not least as they are transmitted from agent to agent, but they are transmitted, they do move in this more literal sense, and it is this movement which accounts, at least in part, for the continuity of the movement.

24) Like the concept of fields more generally, ‘fields of contention’ entails a relational conception of social movements and contentious politics. They are understood as emergent realities, constituted by way of the interactions, interdependencies and relationships of a diverse range of elements. These elements might be individual agents, networks, SMOs or other organizations. They might represent a range of different viewpoints, including some on either side of a for/against dichotomy (e.g. movement and counter-movement). 

, a field is a heterogeneous ensemble. This does not prevent (at least more developed) fields from manifesting structure, however. Structure derives, in part, from the distribution of effective resources (or ‘forms of capital’) within the field. An unequal distribution of resources positions agents relative to one another, constraining and enabling action in relatively predictable ways. In addition, structure derives from the positions of agents (e.g. activist, constituent, police officer, journalist) and from the ‘poles’, centred upon different values, ideologies and identities, which different clusters of activists gravitate towards

25) UK anti-psychiatry was only one amongst a series of similar developments occurring elsewhere around the world
35) The term ‘mental patients’, along with ‘mental illness’, was becoming unacceptable to the point where it could not be used and alternatives were being sought. A dialogical dynamic both within and beyond PROMPT was generating new schemas of psychiatric critique and PROMPT, which was perhaps the main champion of ‘patients’ rights’ and the main critic of psychiatry within the UK at the time, found itself out of line with these schemas and was obliged to change its name. 
39) BNAP and CAPO, between themselves, were relatively successful in generating interest and concern in radical mental health politics amongst a new group of patients and
40) professionals and in drawing already interested parties together. They generated networks and provided ‘schooling’ in oppositional dispositions and skills. They successfully cultivated a demand for change in psychiatry. As such they collectively constituted an important bridge between the first generation of anti-psychiatric radicals and an emerging new generation. They were vehicles of movement within the field.

The NAMH of the 1940s, 1950s and 1960s was a relatively conservative and paternalistic organization. It supported and sought to facilitate government policy and identified strongly with the medical profession and its authority (ibid.). The notion that ‘patients’ might have any role in the psychiatric field other than the sick role was not entertained. In the course of the 1970s, however, for reasons which I do not have the space to consider here (except to note in passing the influence of both anti-psychiatry and Psichiatria Democratica), NAMH underwent a considerable transformation (Crossley, 2003c). It effectively reinvented itself as a (sometimes quite radical) civil rights organization. This involved opening a new legal department within the organization, appointing a radical civil rights lawyer from the USA to head that department, and, following a campaign of the same name in 1971, adopting (for campaigning purposes) the name MIND

43) this was a time when ‘survivors’ of both AIDS and child abuse were beginning to achieve a public profile, and thus the ‘discursive repertoire’ (Steinberg, 1995, 1999) of survivors was established. In either case the naming of the group is evidence of the ‘movement’ of linguistic schemas across different domains, a movement which was highly significant both for members of the new group and those who subsequently joined and/or were influenced by it. They were no longer ‘patients’ or ‘mentally ill’. They were ‘survivors’ of both mental distress and the services provided to deal with such distress.
n. It also generated a new form of collective identification, which linked survivors past and present. Finally, as one early flyer for the group notes, it had strong positive connotations of which ‘survivors’ could be proud: The term survivor was chosen to portray a positive image of people in distress and people whose experience differs from, or who dissent from, society’s norms. (Survivors Speak Out, early information sheet) The development of both this identity and the culture in which it nested was an important step in the development of survivor activism
44) e creating a context wherein new activists can acquire the belief and commitment, what Bourdieu calls the illusio, integral to activism and to fields of contention

clear in this paper is the equally important role of the less personal forms of publicity generated by interactions within the field, and the role of broadcast networks in the generation of that publicity. A field is far larger than a group of individuals known to one another and the ganglia of communication holding it together is comprised of diverse and distanciated communicative channels. Most of the activists that I interviewed had not come into the field through personal contacts but rather through ‘hearing about’ activities in less direct (mediated) ways, and finding themselves thereby sufficiently enthused to seek out node-to-node links

Well-publicized and dramatic projects such as Laingian anti-psychiatry and Psichiatria Democratica’s success in closing asylums in northern Italy play a crucial role at this more distanciated level. The excitement and publicity that they generate effects a ‘magnetic’ pole within the field which attracts neophytes in large numbers, bringing them into nodenode contact with more experienced activists who will instruct them in the craft(s) of activism. As I hope I have also shown, however, smaller scale projects such as those of BNAP and CAPO are important in this respect too. Via the publicity they generate they attract interest, which they can turn into participation, which in turn has a socializing effect that contributes to the reproduction of the movement.

What we see in both the high-profile and the lower profile cases is the importance of projects and events, alongside networks, in the process whereby movements move

Second-generation participants in BNAP, for example, were aware of the limits of the habitus of first-generation activists (‘they were Laingian hippies really’), and developed their own in the context of a critical dialogue with that first generation – a process which combines learning with change. Finally, I have suggested that the process whereby schemas are generated and appropriated is affected by the introduction of new agents who occupy different positions in various fields and thereby have differences of interest, in both senses of the word. ‘Survivors’, practitioners and academics each unconsciously bring along their own baggage to their encounters and this informs their appropriation of the more general activist habitus

importance of the concept of fields to grasping this ‘movement’. As I noted at the start of this paper, conceiving of social movements as fields builds ‘interaction’ and thus ‘process’ into our definition of them. It is this interaction, in some senses, which is responsible for ‘movement’ in the double sense used in this paper. Schemas ‘move’ by means of interaction, and interaction generates a dynamic within which change occurs. The position of the MPU, for example, emerges out of a sympathetic critique of anti-psychiatry; the position of SSO out of both internal conflict within BNAP and the inspiration born of contact with overseas survivor groups at the MIND conference. As spaces of interaction, fields are necessarily dynamic and processual such that ‘movement’ is endemic.

whilst social movements are perhaps best conceived of as fields, fields are always ‘in movement’

Question 23

Crossley, N., ‘Fish, field, habitus and madness: the first wave mental health users movement in Great Britain’, The British Journal of Sociology, Volume 50, Issue 4 (1999)

Answer 23

650) The struggle of the user movement, as we shall see, has traversed the mental health, media, parliamentar y and legal Ž elds.
651) each Ž eld in which activists engage operates according to different dynamics and requires different dispositions, such that what ‘works’ in one Ž eld may not do so in another. What is valued in the media Ž eld may be valueless in the legal Ž eld etc. Furthermore, as we will see, struggle articulates Ž elds and brings each to bear upon the others. It is by attending to these differences and articulations that we are able to get to the heart of the socio-logic of struggle

654) ver y Ž rst sentence of The Fish Manifesto establishes a distance between the proposed MPU and anti-psychiatry. The anti-psychiatry movement, it claims, excludes patients
655) PATIENTS it would seem, are seen as incapable of playing any part in Ž ghting for such alternatives.
thee line of argument in the pamphlet is much more obviously Marxist in orientation than the mainstream5 of the anti-psychiatry move- ment ever was. The struggle of psychiatric patients is identiŽ ed as a part of the wider class struggle, with mental distress being accounted for in terms of the consequences of the relations of production as theorized within Marxism

The document outlines four areas where a MPU could become active. First, they could ‘propagandize’, exposing the injustices of the system and informing patients of the ‘minimal’ rights they enjoyed at the time. Sec- ondly, they could establish a ‘Charter of Rights’, covering such issues as ‘the right to a second opinion, . . . to refuse treatment, . . . to retain clothing in hospital’ and ‘to effective appeal machinery’. Thirdly, they could Žght and campaign on a number of issues including the abolition of compulsory admissions and treatment, of isolation and irreversible treatments and of letter and phone call censorship; the end goal of this being the ‘abolition of mental hospitals and the institution of repressive and manipulative psy- chiatr y’. Finally, they could set up alternatives to psychiatr y in the form of drop-in and live-in centres. All of this was to be achieved under the control of patients

The Union would be organised and controlled only by mental patients and ex-patients. The union membership and voting rights would be limited to patients alone. The union must be run democratically with an effective working group elected and subject to the right of recall. Outside help would be more than welcome, but would only carry associate membership with no voting rights.

The content and discursive framing of the document, not least the decision to form a ‘union’ of mental patients, manifests strong stylistic similarities to the wider culture of unionism and far left activism in Britain at the time

comparisons which the manifesto itself draws between the proposed MPU and other political groupings: ‘Trade Unions, Claimants Unions, Women’s Liber- ation, Black Panther Groups [and] Prisoners Rights’. The concept ‘habitus’ allows us to make sense of this. A habitus is formed through the inculcation of speciŽ c schemas of perception, action and discourse which, in turn, generate practice. 

656) several of the Ž sh group members had been active in other arenas of political struggle prior to The Fish Manifesto: . . . and I were involved for quite a while in the Claimants Union. I’d also been involved in PROP 6 [. . .] Brian was in what’s now the Socialist Workers Party.(Interview 1)

With ‘habitus’ we can trace and explain the ‘infectiousness’ of struggle

657) The argument I am making here connects with the notion of ‘cycles of protest’, which is central in contemporary debates (Snow and Benford 1992, Tarrow 1989, 1998); that is, the notion that activism, both within and across movements, tends to emerge in bursts and clusters. Movement activism  uctuates between quiet periods, where movements are small, few in number and relatively inactive, and then busy periods where they grow in size and number, becoming very active. The time between the late 1960s and early 1970s was clearly a busy period (ibid.) and it is signiŽ cant that the MPU should emerge at this time

According to the main literature on this phenomenon, clustering occurs because the activities of one set of agents creates incentives and opportunities for others, who then take them up (Tarrow 1998). This may be so but my analysis reveals that, in addition, diverse struggles may cluster because they are generated by a common ‘resistance habitus’ whose underlying ‘grammar’ may be transposed in to different Ž elds and whose motivation structure tends towards such trans- positions.

‘Habitus’, combined with ‘Ž eld’, is also useful for making sense of the near paradoxical situation regarding patient involvement in The Fish Manifesto: viz. that although it advocates total patient control and criticizes anti- psychiatry for excluding patients, it was drawn up by a committee whose only user member was out-numbered by social workers three to one. This situation, in which non-users have a strong involvement in the initiation of user SMO’s, is not unusual in the histor y of the user movement. I have identiŽ ed it in the formation of many central contemporar y user SMOs.7 It is a fact that needs explaining, however, and this can at least partly be achieved by reference to habitus and Ž eld. Social workers have and continue to be involved in the user movement, particularly in setting up groups, because they have the organizational skills required to mount cam- paigns and form groups, which they can, in turn, pass onto users. They are disposed to do so because they are trained as educators and organizers. Encouraging and teaching users to form a union is, at one level, only a radicalization of the standard organizational and pedagogic role of the social worker. 

658) But why radicalism? Why haven’t these social workers encouraged com- pliance and docility as theories of the ‘ideological state apparatuses’ (Althusser 1984) or ‘disciplinary dispositifs’ (Foucault 1979) suggest they would? One may Žnd a partial answer in the ‘interests’ of the workers themselves. Medical hegemony in the mental health Ž eld is detrimental to the material interests of social workers and psychologists and thus one might predict that some would be inclined towards radical assaults upon it

At a wider level, however, radicalism would be predicted on the basis of the class habitus of health professionals, be they social workers, psychologists or nurses. These groups belong to the ‘new middle class’ of service workers, who are repeatedly identiŽ ed as statistically most likely to engage in new social movement activity 

As Eder (1993), following Bourdieu (1984), has argued, it is within this class that the habitus of radical movement activity has seemingly developed. Not only do social workers have the skills of organization to transmit, therefore, they also tend, by virtue of class location and habitus, to have an inclination towards radical politics

re ective and creative aspects of the praxes of the Ž sh activists. They were re exively questioning their usual habitus, the habitus which is required for the reproduction of the mental health Ž eld, and developing, in both intentional and unintentional ways, a resistance habitus

659) For Parsons the sick role functions to eliminate the possibility of the collectivization and radicalization of the ill . . . the two most dangerous potentialities, namely, group formation and successful establishment of the claim to legitimacy, are avoided. The sick are tied up, not with other deviants to form a sub-culture of the sick, but each with a group of the non-sick, his personal circle and, above all, physicians . . . deprived of the possibility of forming a solidar y collectivity. (Parsons 1951: 477)

The fact that a MPU emerged falsiŽ es this theoretical hypothesis and sug- gests a ver y different understanding. Parsons is right, of course, that the ‘ill’ can form themselves into collectivities, but he is wrong to suggest that medi- cine prevents this.

mental health Ž eld has in fact constituted a means by which such a sub-culture can be formed. In the Ž rst instance, by removing the mad from society and relocating them in mental hospitals, it created a collectivized population and, as such, the conditions for group socialization and radicalization. Furthermore, it facilitated the development of networks which, as often happens in movement formation (McAdam et al. 1988), provided a basis out of which a movement could subsequently grow

Net- works constitute both communicative channels and social capital which movement protagonists can draw upon in their early interventions

through its labels and categories psychiatry imposed a uniŽ ed identity upon this population, which they, in turn, were able to appropriate for themselves. Mental patients were able to experience themselves as a uniŽ ed class of subjects and to form a collective identity because that is how they were experienced by a ‘third party

It is signiŽ cant, in this respect, that MPU members identiŽ ed themselves as ‘mental patients’. The more recent histor y of the user movement (660) has and continues to involve considerable deliberation over forms of selfidentiŽ cation, with preference now being afforded to terms such ‘user’ or ‘survivor’

improvement of conditions in the mental health Ž eld removed obstacles and improved access to resources for mental patients, thus enabling mobilization

Patients in the nineteenth and early twentieth centuries had very little leverage for complaint because their ‘treatment’ functioned within the context of the poor law system and was intended to be an unpleasant last resort (BusŽ eld 1986, Scull 1993). They could not expect to be treated well and in the absence of a policy framework such as was provided by the welfare state, had no rights to welfare which they might invoke in critique. It was only with the formation of the welfare state that the social element was added to ‘citizenship’, stipulating rights to welfare (Marshall 1992) and thus it was only then that a politics of welfare as we know it, a legitimation (661) politics of welfare rights, could emerge (Offe 1993, Habermas 1988)
For mental patients to be part of this there was the further precondition that the mental health Ž eld had to be, as it was, incorporated into the welfare Ž eld, and that the mentally ill had to be seen as citizens with an illness. 

GROWTH AND THE MEDIA FIELD

consequence of this, as students of media ampliŽ cation might (662) 

predict (see Goode and Ben-Yehuda 1996), was considerable acceleration of the process of group development. The Today programme generated excitement and anxiety at both a national and a local level. The mental health Ž eld was electriŽ ed, ensuring that attendance at the public meeting far exceeded expectations

intended to challenge the authority of mental health practitioners and to construct their alternatives to institutionalized psychiatry, and they launched a broader ranging challenge against the state, which was believed both to support psy- chiatric power and, at the same time, to be dependent upon it. This was a fairly novel development, as I have already suggested, but its novelty counted for little in either of these two Ž elds. Indeed, there is some evi- dence of resistance from within the mental health Ž eld: MPU posters were ripped off hospital walls by staff and activists were both intimidated and had (663) their medication increased (Sunday Times 23/9/73, COPE 1974, Hinch- cliffe 1977). The novelty of the MPU had a ver y clear value in relation to the media Ž eld, however. It made an interesting story and thus had ‘news value’. This is why Today wanted the interview and were prepared to stick with it even when they didn’t get exactly what they wanted

The news value of the MPU was ‘cashed in’ in the media Ž eld, transformed into publicity and thereby into a massive increase in the size of the network of the group, its ‘social capital’, and in its standing qua political group, its status or ‘symbolic capital’. The MPU had a public proŽ le and a legitimated (by the media) claim to be taken seriously. Furthermore, with new membership came the various forms of cultural and symbolic capital which members brought with them. New and potentially exploitable skills and statuses were acquired. These new developments were not necessarily of use to the MPU in relation to the media Ž eld. Having ‘spent’ the news value that their novelty afforded them they were arguably in a diminished position in this respect. But these new developments did considerably bolster their position within the mental health and political Ž elds. In exchange for their news value in the media Ž eld, they had acquired forms of capital that would be of value for their struggles in both of these other two Ž elds.

664) informal contacts established across groups, but each remained relatively autonomous. Borrowing Durkheim’s (1964) terminology, we could say that mechanistic solidarity began to give way to organic solidarity because of the pressure of demographic change; that is, because of the increase in the size of the group
It is at this point, I contend, where a group began to give way to a move- ment. The homogeneity and centralization of the union was being dis- placed. A process of diversiŽ cation and differentiation was in motion and any sense of centralized control was lost as new groups began to emerge, quite independently of the initial Paddington protagonists. 

it is evident from the earliest MPU Newsletters that forms of what Bourdieu and Passeron (1996) call ‘pedagogic action’ began to emerge, which facilitated the reproduction of the resistance habitus which, in turn, reproduced the movement through time. One very obvious manifestation of this is the many ‘reading lists’ which the MPU produced
These various texts, when internalized by way of the habitus, armed MPU members with theories and rhetorical devices which could be used both to form new self- understandings and to attack and defend against ‘the enemy’

665) Groups throughout the countr y organized regular meetings and events which allowed new members to Žnd their feet as activists and gave more seasoned campaign- ers the opportunity to pass on the skills and dispositions which constituted them as such, thus passing on the habitus of activism and perpetuating it qua social practice. A distinctive habitus was being formed, as were the mechanisms required to reproduce it.
666) The dominance of the medical and professional discourse on psychiatr y, which deŽned it in terms of health, illness and healing, was brought into question and different roles to those usually afforded to ‘patients’, were introduced. 

667) I have sug- gested that the initial impetus this generated was ampliŽ ed by way of an interaction between the media and the mental health Ž elds; the activities of the MPU within the mental health Ž eld constituted newsworthy events for the media Ž eld which, in turn, attracted publicity, resulting in the gener- ation of social and symbolic capital for the MPU which they could use within the mental health Ž eld. 

Identifying these predisposing factors takes nothing away from the struggles themselves or the agents involved in them. It simply indicates the historicity of social life and the fact that agents are, as Merleau-Ponty (1962, 1988) argues, always already socially situated

668) Habitus and field never remain the same but they lend continuity to life and to struggle, ensuring that histor y need never and can never start again.

Question 24

Crossley, N., R. D. Laing and the British anti-psychiatry movement: a socio–historical analysis, Social Science & Medicine, Volume 47, Issue 7,1 October 1998, Pages 877-889

Answer 24

878) Distinguishing features of anti-psychiatry

antipsychiatry was a ``revolt from above’’; that is, a revolt within the ranks of psychiatrists themselves. The key ideologues (i.e. Laing, Cooper, Berke, Schatzman, Redler) were all psychiatrists and were all networked with each other

879) the ``revolt from below'' constituted by the growth of the user/survivor movement, which began, in Britain, with the formation of the Mental Patients Union in 1973 (Crossley, 1997).

It is true, I concede, that anti-psychiatry was strongly focused around ideas and studies produced by a handful of individuals. Laing in particular was a charismatic counter-cultural guru and he and the others I have mentioned formed a nucleus of ``movement intellectuals'' (Eyerman and Jamison, 1991) around which the anti-psychiatry movement was formed. Their texts, particularly Laing's, were central elements in the movement and their public appearances and lectures attracted enormous crowds.

The movement extended wider than the activities of these organisations and their members too, however. In the ®rst instance, there was at least some support for and appropriation of anti-psychiatric ideas and practices within the mental health professions. Many members of the traditional old guard in psychiatry opposed Laing strongly but the same was not necessarily true of the younger generation.

880) It is this wave of in¯uence, interest and excitement, running from the nucleus of Laing as his colleagues, through the doctors and patients who appropriated their ideas, out of the psychiatric ®eld and into the media, arts, political and educational ®elds that justi®es reference to an anti-psychiatry movement.

three overlapping elements: a proto scienti®c revolution which failed, a shift within left wing politics and the emergence of the 1960s counter-culture.

881) he had acquired a philosophical habitus*,
882) What Laing was identifying and advocating at this point, I suggest, was not a revolt against psychiatry, less still a social or political revolution, but a ``scienti®c revolution'' or ``epistemological break'' of the type that we today would associate with the work of Kuhn (1970) and Bachelard (1984). He could sense the assumptions of psychiatry crumbling and a new approach, a new paradigm, emerging.

His potentially scienti®cally revolutionary ideas were contravening the censorship, usually selfregulated by way of the habitus, which characterises all social ®elds, limiting what can be said and de®ning the way in which things must be said if they are to be deemed legitimate (Bourdieu,

884) These various changes in Laing's position did not happen all at once and were not strictly linear, at least not in the order that they were published. Throughout the period 1964±1967 Laing's work veers between that of the scienti®c revolutionary, working in psychiatry, and the political revolutionary who attacks psychiatry from without

The publication of The Politics of Experience in 1967 (Laing, 1967a) was something of a watershed, however. This text, which expanded considerably upon the ideas outlined in the second of the two New Left Review papers, provoked a critical response from Laing’s fellow psychiatrists and ®nally pushed him beyond the bounds of their acceptance

censorship mechanism of the psychiatric ®eld constituted a push factor, reducing Laing’s opportunities for action, whilst the transformation of the left provided a pull factor, drawing him in by virtue of the opportunities it a€orded.

885) His concern was with politics in the wider, less doctrinal and party based sense

e 1960s counter-culture has been the subject of much nostalgic myth making. There is good sociological research, however, which indicates very strongly the changes of the time and the fact of counter-culture as praxis. Ecstacy and Holiness by Musgrove (1974) 

Musgrove and others date the emergence of the counter-culture between 1964 and 1969, just about the time that Laing was moving away from psychiatry and towards the New Left and anti-psychiatry

Another key link between Laing and the counterculture was drugs, particularly LSD. Laing experimented a great deal with LSD, both with patients and with friends and he established himself as something of an expert on the subject, particularly in relation to ``bad trips’’, within the counter-culture.

886) He played the game and believed in it, he appropriated its illusio, but he played the game as he played every game, to his own advantage, using whatever trump cards were available to him Ð in this case a medical background and the cultural and symbolic capital that are attached to it. He was enthused by the new ®eld opening up before him and he wanted to make his mark within it

The work of Laing and his colleagues gave the counter-culturalists a focus and resonated with the zeitgeist in such a way that it enjoyed massive appeal and appropriation

McAdam et al. (1988) have argued that the survival of a social movement, beyond the initial burst of enthusiasm which launches it, depends largely upon the formation of more formal ``social movement organisations’’ (SMOs) whose activity establishes mechanisms which keep the impetus alive

887) Anti-psychiatry provided users with a di€erent discourse which constituted their experience and their identities di€erently and in a more appealing fashion, as the enthusiasm for them attests
888) The politicisation of experience, personal relations and psychiatry that it achieved was a contribution which it provided for activists in all ®elds, not only psychiatry Ð again this is illustrated concretely by such events as the dialectics of liberation congress and the Anti-University. In this respect anti-psychiatry was not just an event in the history of British psychiatry. It was an event in the history of British political culture

Question 25

Barbot, J., How to build an ‘‘active’’ patient? The work of AIDS associations in France, Social Science & Medicine 62 (2006) 538–551

Answer 25

538) We find four different cases: the patient as manager of his illness, the empowerment of patients, the science-wise patient and the experimenter

t these perceptions of the ‘‘active’’ patient, in terms of the same pathology, are based upon different ways of seeing: the nature of the relationships between the different types of knowledge of the illness (scientific knowledge, clinical knowledge, experience of the illness) and the distribution of roles and powers among the various actors in the healthcare system (the government, pharmaceutical companies, the medical profession, the patients)

we see increasing acceptance of the perception of the ‘‘active’’ patient, a patient who is more ‘‘tuned in’’ to the medical world, with skills and the wherewithal to act.

on the other hand, despite this acceptance, opinions differ when it comes to defining the limits to patients’ newfound skills, the nature of their scientific and medical knowledge, the validity of their actions and the scope and legitimacy of their powers.

The purpose of this article is to examine how patient associations approach these questions.
One set of social science research on medical practices shows the way in which, historically speaking, the boundaries have moved between what are considered
539) to be patient skills and initiatives and what remains the responsibility of the doctor. The issue was raised already back in the 1950s, when Talcott Parsons attributed very few scientific or medical skills to patients, judging their reactions to be emotional and therefore irrational

. Studies of a functionalist nature highlighted the way in which patients who were cut off from their usual world ‘‘socialized themselves’’ to suit the operation of the medical institution

Patients had to become more ‘‘active’’ in order to acquire the cognitive and moral references of their medical environment, and thereby usefully participate in their own therapy

studies of an interactionist nature looked at situations in which patients used the knowledge they felt they had acquired of their illnesses to question the legitimacy of medical decisions (Goffman, 1961; Roth, 1963). A new perspective was born: that of a patient who was actively involved in ‘‘negotiating’’ therapy by using his or her own knowledge and resources.

show that by carrying out an increasing number of technical acts, patients take an active part in the allocation of the medical work. Because they live in different ‘‘social worlds’’ (the medical world, but also the world of work, family, etc.), patients construct a point of view of their illness which cannot be reduced to just that of the world of medicine
They are therefore obliged to act in order for their doctors to recognize the legitimacy of this point of view.

Parallel to this social science research which highlights the historical roots of the various ‘‘active patient’’ models within medical practice, another set of studies demonstrates how associations created to fight illnesses have themselves worked on the models

In France, the philanthropic leagues created at the dawn of the 20th century paint a picture of patients who are seen on the one hand as ‘‘objects of solicitude’’ and on the other hand as ‘‘subject to moralization.’

. The numerous studies on associations created to help chronic illnesses show that major changes were to follow. These associations were far more involved with the patients and their families, and gave new room to the experience of illness. Self-help groups sprang up in Anglo-Saxon countries to allow patients to share experiences (Morgan, Calnan, & Manning, 1985).

More often than not, these associations feel that skills should be divided between the specialists (doctors and researchers) who hold both the medical knowledge and the initiative regarding care and research, and the patients and their associative entourage who deal with the ‘‘psychosocial’’ aspects of the illness.

This distribution of roles was criticized at the beginning of the 1980s. Several social science studies showed that patient associations have joined established actors in the production of medical and scientific knowledge.
. This is particularly the case of those involved in rare illnesses (Rabeharisoa, 2003; Rabeharisoa & Callon, 1999) and in AIDS (Barbot, 1998; Dodier, 2003; Epstein, 1995, 1996).

. In many countries the fight against AIDS constitutes a paradigmatic example of transformations in patients’ individual and collective relationships with the medical world. This paper argues that it would nevertheless be a mistake to interpret this as the arrival of an ‘‘active’’ patient model that is both radically new and unique (

with regard to the same pathology we can see that different associative perceptions of the active patient coexist.

In its own way, each association establishes a hierarchy and distributes the different types of knowledge of the illness among the actors.

Some of these different perceptions of the active patient prove to be very similar to those which have been developed by associations in France since the 1950s, with regard to chronic illnesses; others are more original (for example, we find models that were imported from the US).

540) In its newsletter, entitled Remaides, AIDES
541) develops the notion of the patient as the manager of his illness.

AIDES campaigns for changes in the doctor/patient relationship through official recognition of patients’ own specific knowledge, gained from their first-hand experience of the illness. For AIDES, the sufferer has specific knowledge relating to the illness experience. The patient must convey this experience to the doctor, not only in order to obtain the most suitable treatment, but also to enlighten doctors with regard to aspects of the illness of which doctors cannot be aware

Doctors’ knowledge is considered to be partial, due to their inability to grasp the dimension of the illness that relates to the patient’s personal experience.

Given the patient’s possession of this unique, individual knowledge, dialogue must play a central role in the doctor/patient relationship

notion that doctors shut inside medico centric forms of knowledge tend to ignore certain dimensions of the illness.

Remaides never seeks to lump personal testimonies together; on the contrary, it stresses the singularity and irreducibility of individual situations, advising the reader not to transpose the positive or negative results of a treatment onto his or her own case.

. The sufferer’s involvement in the acquisition of information on the illness, its symptoms and its treatment is seen as a vital element in the patient’s biological and social survival.

Remaides also contains numerous articles on the mistrust of what we refer to as non-mainstream therapies. Recognition of the utility of alternatives to allopathic medicine is restricted to certain specific areas: nutrition (with cocktails of vitamins), pain, and physical and moral well-being (through yoga, acupuncture and various relaxation techniques). There is no explicit condemnation of alternative routes, but they are usually presented as complementary to conventional medicine

patients’ experiences have a central role in the AIDES association.

Remaides’ seeks to provide a forum for the exchange of knowledge on the illness; a space for collective learning

542) The second generation of AIDS associations have developed conceptions of an ‘‘active’’ patient more ‘‘tuned in’’ to the construction of medical knowledge.

‘‘emergence’’ of a second generation of associations in the early 1990s, which publicly positioned themselves as associations of sufferers.

ACT UP-Paris militants found, in the United States, the model of a strong, proud homosexual community determined to assert its lifestyle and its political demands with respect to the AIDS epidemic. Created in 1989, ACT UP-Paris literally imported the slogans, modes of action and organization of ACT UPNew York

Before the AIDS groups mobilized, according to ACT UP-Paris, the medical corps enjoyed a position of hegemony, in the total absence of any counter-power. In the doctor/(543) patient relationship, the doctor was imbued with all the force and authority of an organized and powerful medical corps. The patient was just an isolated, and therefore weak, individual. Breaking away from this domination-based model, the association maintained, entailed forming a community of sufferers, active at the macro-level, to redress the balance of power.

In the view of ACT UP-Paris, the medical corps is headed by a medical elite which sets rules that are then imposed on the patients by the mediation of individual doctors

ACT UP-Paris should intervene, for example, to denounce alliances between the medical elite and the government. These alliances, according to ACT UP-Paris, create a medico-political elite which sets healthcare standards not on the sole basis of scientific data on the appropriateness or otherwise of treatments, but on the basis of their financial cost.

ACT UP-Paris also has a role in combating another shortcoming of the medical elite: its tendency towards inertia. This inertia is the logical consequence of the absence of any counter-power.

. The quest for information on treatment plays an essential role in this respect as a tool of counter-power

It involves the collective mobilization of patients to seek out information at its source, to participate in scientific conventions, and to demand that those conducting clinical trials should disclose the results and state of progress of their research.

Information is the cornerstone of counter-power because it also enables a shift from what we have termed a global critique— based on a general notion of relations of domination— to a detailed critique. Information provides the means to put forward a well-documented critique

This information is supposed to enable the patient to reenact the same type of operation with his doctor: insisting, for example, on knowing why he has been prescribed certain drugs when he knows that other, reputedly more effective, treatments are available.

544) Science-wise patient

ACTIONS TRAITEMENTS has been influenced less by American homosexual organizations than by US consumer pressure groups. Created in 1991, ACTIONS TRAITEMENTS focuses on treatments and clinical research

. In its newsletter, Infos Treatments, ACTIONS TRAITEMENTS puts forward another representation of the patient, one which we have dubbed the science-wise patient. This patient escapes the clutches of death through strategic action focused mainly on access to the latest innovations in therapy

In the case of AIDS, thanks to the mobilization of the associations, the tables can now be turned, bringing about a different asymmetry, this time in favor of the patient. This asymmetry comes from the respective time-scales of the different circuits of information on treatment: whereas the doctor is dependent on the slow rhythm of international conferences or of peer-reviewed publications in specialist journals, the patient, by participating in association meetings or reading patient magazines, can be more quickly informed of the latest clinical research findings

545) recurrent theme in Infos treatments is the criticism of archaism. The policy of the French Ministry of Health is poorly defined and suffers from being short-sighted: the Ministry reins in the budgets allocated to drug spending, instead of looking ahead to the substantial savings that better AIDS treatment would generate (notably by reducing the costs linked to the hospitalization of sufferers).

In its newsletter, Sida Tout Va Bien, POSITIFS develops the image of the patient as experimenter. Unlike ACTIONS TRAITEMENTS, this is not the patient who goes in search of the healthcare provision considered to be the most appropriate, but a patient who plays an active part in the constitution of knowledge.

patient must travel from one doctor to another, from one medicine to another, in order to reconstitute truth for himself or herself

Alternative medicines are dominated, neglected or decried by the official bodies; they are pushed to the margins of legality. Lack of official recognition of alternative medicine exposes these medicines to the scourge of charlatans, whose existence serves further to vindicate the advocates of the dominant, allopathic, ideology. One of POSITIFS’ objectives is to strive to force public organizations to recognize alternative treatments and to follow up other lines of research.

546) Sida Tout Va Bien relates numerous testimonies of sufferers who recount their long journey through the labyrinth of doctors and divergent medicines to find the most appropriate treatment.

Conspiracy and paranoia are recurrent themes for POSITIFS. For example, on the specific question of medical research, a 1992 editorial denounced the hegemony of AZT, ‘‘the only official course of treatment,’’ whose side effects, toxicity and absence of clinical effectiveness are the association’s leitmotivs

547) boundaries have moved between what are considered to be patient skills and initiatives and what remains the doctor’s responsibility.

far from promoting a radically ‘‘new’’ and ‘‘active’’ patient global model, one major characteristic of this movement is that it has led to the creation of different models. The aim of this article has been to highlight this diversity and to identify its various components

Findings show that the way in which those associations perceive the ‘‘active’’ patient cannot be separated from their more general involvement in the fight against AIDS

We have identified four cases: the patient as manager of his illness, the empowered patient, the science-wise patient, and the experimenter

We have shown how two questions—which go far beyond the sphere of medical research or even medicine—have played a major part in building these active patient models: on the one hand the question of how the associations are positioned (and their public identity in particular), and on the other hand their relationship with the Government (and more specifically with the Government’s role in developing scientific knowledge).

The two generations have adopted different positions with regard to their public identity. The first one chose the position of mediator between HIV+ patients and society as a whole, whereas the second generation preferred a patient and/or homosexual posture in direct contact with the medical establishment and society.

different associative models reflect contrasting perceptions of the way in which scientific knowledge is achieved

Table on page 548 outlining different types of patient given in this article - V. helpful!!

Question 26

Landzelius, K., Introduction: Patient organization movements and new metamorphoses in patienthood, Social Science & Medicine 62 (2006) 529–537

Answer 26

529) The figure of the patient is thematized as an historical inscription and a formidable dimension of
personhood under modernity/late modernity

conventional categorizations of the patient are
undergoing accelerated processes of change at the present time.

three transformational trends: moves to author and authorize patienthood, mutiny from patienthood, and mutations in the category of the patient. Such metamorphoses in patienthood represent both reflections and repercussions—at once consequences and catalysts—of the proposed politics of vitality

The politics of vitality is a broad label intended to capture both pro-active and reactive contests over health, writ large: from preventive to
curative to palliative to normative to simulative to
transformative to alternative projects and agendas.

While several complex historical factors inform these
contests, we emphasize four dominant spheres, or
vectors, of influence: (1) revolutionary feats in technoscientific engineering, (2) restructurings of healthcare
systems across industrialized nations, (3) a revised ‘contract’ between science and the public stemming
from a crisis of confidence in science, and—last but not
least for our purposes here—(4) an upsurge in the
articulation and diversification of health activisms.

ripple effects along
relations of power spanning from the transnational to
the local (and vice versa), and from macro-political
articulations to what Foucault has called the ‘‘microphysics
of power’’ (Foucault, 1994).

530) varieties of activism, politically charged and
mobilized specifically with regard to health issues, are
on the rise.

current terminological juggling and proliferation, the
grasping for conceptual control to get our collective
minds around an emergent phenomenon

, for our part we have here entitled this
collection ‘patient organization movements’: a label that
clearly calls attention to the figure of the patient, the
phenomenon of organization, and the dynamics of
movements

, Wolfson (2001)
introduces the notion of ‘‘interpenetrated social movements’’,
Klawiter (2003) discusses ‘‘hybridized social
formations’’, Ganchoff (2004) emphasizes ‘‘multiple
sites for citizen participation’’, Frickel (2004) discusses
collective action framing and ‘‘interdisciplines’’, Stearns
and Almeida (2004) underscore ‘‘coalitions’’, Schneirov
and Geczik (2002) talk about ‘‘dual movements’’ and
McCormick, Brown, and Zavestoski (2003) talk about
‘‘boundary movements’’

, Crossley (1999) envisions
‘‘fields of contention’’, Mercer (2002) proposes
‘‘vertical integration and hyper-experts’’, Rabeharisoa
(2005) emphasizes ‘‘mediational’’ roles, Hess (2004)
highlights ‘‘epistemic politics’’, and Duyvendak and
Nederland (2004) underscore the instrumental tensions
between narrow and broad presentations of ‘‘civic
identity’’. As the twin pillars of social movement
theorizing, it goes without saying that the two theoretical
bents—the dual considerations of structure and
power—are contingent and represent systematic and
(interestingly enough) convergent attempts to grasp just
what is particular about collective action mobilized
around health

531) McInerney’s
writing is in dialogue with discourse analysis and the
representational bent of social movement theories to
examine the rhetorical strategies that activists deploy to
frame ‘‘the issues’’ and thereby align supporters and
recruits.

Rabeharisoa’s article on the French Muscular
Dystrophy Association’s ascendancy over the past half
century underscores the significant brokerage this
patient organization performed as ‘‘a mediator between
different social actors’’ (Rabeharisoa, 2005). To achieve
this role necessitated that the Association forge a ‘‘dual
path’’ to make visible this rare disorder: opening up
spaces for non-patients within the patient community—
under an inclusive logic that universalized and generalized
the disease, plus a corresponding ideology of what
we might call ‘science for all’—and opening up spaces
for patients within society at large—under the rubric of
a shared humanity.

Taking our cue from the challenge
that presumptive labeling may prove counterproductive,
we are at least compelled to ponder to what extent preset
theorization (and its baggage) may end up serving the
interests of those in power and/or blind us to the
phenomenon at hand

may behoove us to
de-institutionalize our own thinking about movement
dynamics

query relations of position, power and
performance. Specifically—with the aim of evaluating
the success of health activism—this involves examining
the architecture of linkages that consolidate individualagents
into a more-or-less self-identified communal
aggregate, and juxtaposing these variables with respect
to the group’s vitality, vocality, viability and the extent
of its victories

On the
formal end of the organizational spectrum, the various
French anti-AIDS organizations, the British anti-psychiatry
movement, and the French Muscular Dystrophy
Association claim prominence: each boasting respective
governing structures, official planners, strategic targetsettings,
staged events, and similar bureaucratic accoutrements

e ‘public relations’ campaigns of U.K mental health activist groups—campaigns playing
out as ‘ad wars’ on rented billboards in the London
metro underground (see Crossley, 2005).

the pioneering telethons designed by a nascent
French Muscular Dystrophy Association proved enormously
effective in foregrounding the disease, and
played no small role in the persistent rise of this
association to its largely undisputed authority as a
mature, well-seasoned patient advocacy group (Rabeharisoa,
2005)

532) . In
mapping the direct importation and imitation of
organizational and tactical strategies from ACT-UP in
the US to its French counterpart (and onto South Africa
and other countries), Barbot (2005) directs our attention
to the new kind of ‘‘packaging’’ of organized resistance:
one with a streamlined sophistication and global
intensification in cross-national transfer arguably qua a
corporate and/or commercial modeling as much as a
grassroots one.

mid-spectrum: global feminist interventions
in contraceptive technologies; ‘‘motherhood lost’’ activists
in the US; voluntary euthanasia proponents in
Australia and globally; online associations for chronic
fatigue and multiple chemical sensitivity sufferers; and
American anti-aging activists

The causes of
chronic fatigue and multiple chemical sensitivity (see
Dumit, 2005) are particularly noteworthy in giving us
acute examples of contested disorders where banding
together is not only a matter of political expediency, but
of critical epistemological (and to some degree ontological?)
necessity

. For, it is only by means of consensusbuilding
a shared storyline, a master narrative of
symptomatology, that the afflicted have succeeded in
achieving disease reality and accordingly their own
validity

It could be speculated that, in short, people
suffering disorders that are contested or denied must
organize, in order to literally author into existence ‘their’
respective diseases. Far from following upon a biomedical
diagnosis, organization rather becomes the catalyst,
which is vital to securing a ‘‘science of the
disorder’’

e informal end of the
organizational spectrum, we find quasi-organized loose
networks linked by-and-large via gestures of solidarity
and co-identification. Such dissipated alliances account
for the ‘‘virtual community’’ imagineered into existence
by breast cancer cyber-activists, as well as that
constructed by parents of preterm babies; and it best
describes the self-fashioning of parents who happen to
share similar objections to routine vaccines

proven vitality and impressive vintage of self-help
groups, and their apparently burgeoning numbers in the
age of the internet, prompt us to recognize the analytical
value of better mapping comparisons between self-help
organizations and health activist mobilizations

How do
patient groups with a long history of public involvement
and mutual support projects fit into the growing stream
of grassroots health activism?

what can we identify as ‘new’ about emerging
health activism? Barbot’s work delves into questions of
historicity in the French anti-AIDS movement by
attending to shifts from ‘‘first generation’’ organizations
(which followed upon early 20th century philanthropic
leagues and even hygiene campaigns) to ‘‘second
generation’’ organizations (informed by a post-1960s
civil rights and identity politics militancy)

533) Locating the
patient becomes an even trickier matter in relation to
interventions in contraceptive development, where
feminist campaigns have invested considerable effort to
commandeer representations away from patienthood.

As Hardon’s study (2005) on the topic implies, feminist
agendas have aimed to wrest contraception from a
medicalized idiom of population control and re-inscribe it with the logic of lifestyle choice

we find patienthood further marginalized
in the collective activism of women who have
endured miscarriage or stillbirth (see Layne, 2005).

For our final example of the categorical sidelining of the
patient, we can cite the political moves to de-institutionalize
the mentally ill and mainstream them into the
community (yet not de-pathologize them)

The review above briefly interrogates the category of
the patient;

we would like
to raise the issue of how contemporary health activism
may both mirror and propel epistemic transformations
in the category of the patient, what we might call represcriptions
of patienthood. We intend the category of
the patient as a shorthand to capture the normative
status, agency, subjectivity and performance of ‘being a
patient’ at any given historical moment,

As Foucault (1994, p. 134–135)
influentially argued, the patient arises at the confluence
of three dominant trajectories: ‘‘biohistory’’ (the ‘‘effect
of medical intervention at the biological level’’);
‘‘medicalization’’ (the fact that starting in the 18th
century human existence, human behavior, and the
human body were ‘‘brought into an increasingly dense
and important network of medicalization that allowed
fewer and fewer things to escape’’); and the ‘‘economy of
health’’ (which he defined as ‘‘the integration and
improvement of health, health services, and health
consumption in the economic development of privileged
societies’’). Foucault also envisioned individuals to be
disciplinary subjects of the biomedical gaze

the citizen-patient emerged a subject/object
keenly versed in self-surveillance (cf., Vaz & Bruno,
2003).

, our argument takes it as axiomatic that patienthood
constitutes a fundamental parameter of
personhood as this identity-construction has been
historically construed

Metamorphoses of the patient politicized:
1. Moves to author and authorize patienthood

The cases of French anti-AIDS organizations and
those joined around (anti)psychiatry in the U.K (the
articles by Barbot and Crossley, respectively) introduce
the first deviation from convention: the essential
oxymoron of the activist patient and the patient activist.
In both instances, we encounter a multiplicity of activist
groups with varying political agendas who gravitate
around a given disease/disorder,

Both authors show
that competition for followers, for visibility, for
resources and the like, has compelled each group to
carve out its own distinctive niche in the politicized
landscape—even in cases when groups share roughly the
same goals. The effect seems to be that activists are led
to frame, fine-tune and foreground nuanced inter-group
differences in understanding patients’ needs, wants,
rights, positions, etc.

One consequence of this, we
suggest, is that activists—and to some degree their (534) supporters, detractors, spectators, instigators—are
charged at base to think through patienthood, to critically
engage with questions of how to configure the patient
and whom to configure the patient.

The cases of muscular dystrophy in 20th century
France (Rabeharisoa, 2005), and that of contested
disorders in the present-day U.S. (Dumit, 2005),
exemplify movements whose initial engagements with
the category of the patient are by way of quest: in
pursuit of an identity they have been denied.

illustrate that paths toward patienthood
entail authoring and co-authorizing new codes and
counter-codes

For sufferers of denied,
disputed or unclassified diseases, the political agendas
of activists must of necessity be invested in securing a
shared ‘‘disordering’’, to wit a shared ontology of
disorder

legitimacy of this (narrative) resource
might well be determined in direct measure to activistsufferers’
successful recruitment of diagnostic evidence
and ‘‘biofacts’’ ‘‘on their side’’ (see Dumit, 2005).

In her study of the many and heartfelt words and
worlds intersecting in/on the website of Breast Cancer
Action Nova Scotia (BCANS), Radin illuminates the
dialogical building-blocks whereby a ‘shared’ disease
becomes the stuff of interpersonal bonding and solidarity-building
for breast cancer sufferers

Read with an eye on the
category of the patient, it can be argued that these texts,
in effect, constitute group negotiations about how to
perform patienthood and how to live patienthood

moves to author and authorize
patienthood: to frame, locate, empower, potentiate, and
speak for the patient

2. Mutiny from patienthood

feminist interventions into contraceptive development
can be seen as two-pronged. One objective demanded
rigorous scientific testing to guarantee the safety and
efficacy of new birth control, whereas a second objective
denounced suspect scientific compliance in policing
female reproduction to serve population control. Via
their dual lobby for the de-medicalization of women
alongside their insistence on increased medicalization of
drugs that regulate women’s bodies and biology—these
campaigns arguably mark moves to re-cognize the
patient into a heterogeneous citizen/patient/consumer
individual.

535) Through the activisms involving anti-immunization,
contraceptive intervention and miscarriage/stillbirth, we
witness the very authority of biomedicine being put on
trial: its heretofore largely unquestioned hegemony to
pathologize certain individuals, at certain times, for
certain purposes infiltrated and laid open to mutiny.
Contra this, the concluding three articles represent
moves to expand biomedicine’s jurisdiction into new
and uncharted territories.

3. Whereas
   with immunization medicine, patienthood is an artifact of
   citizenship; with anti-aging medicine, patienthood is an
   artifact of nature

physician-assisted suicide
links a final melding/morphing of patienthood into
personhood, surrendering the latter into the former in
the name of a ‘natural’ death-with-dignity that proponents
espouse

quests for
euthanasia reify the embedded nature of patienthood as a
precondition of our existences.

Landzelius (2005) examines the coming-into-existence
of the preterm baby

The cyborg as patient
and the patient as cyborg illuminate the fact and the
symbol of the (category of) patient as an always-already
emplotment, an artifactual being-in-the-world who
prosthetically materializes, incarnates and animates all
the fundamental machineries of modernism.

the first group of studies exemplify health activism to
articulate and amplify the voice of the patient; whereas
the second set illustrated activism that sought to retract
and circumscribe routine impositions of patienthood.
The third and final set of studies presents evidence of
veritable mutations in the category of the patient—health
activism to chaperone patienthood into new forms and
associations.

The patient’s insistent heterogeneity

The patient emerges as
not just a site for affliction, treatment and research, not
just a site for interpenetrations on the part of powerful
institutions and competing interests, but a site for
examinations of sociality and morality, nature and
culture, freedoms and duties, and for a constellation of
inscriptions from human rights to consumer rights to
legal rights to citizens rights.

Once a subject governed predominantly by disciplinary
practices (in the first instance, via authoritative
scientific and biomedical knowledge-turned-therapeutics
and in the second instance, via the active internalization
of disciplinary therapeutics turned ‘‘logic to live by’’),
patienthood is increasingly an experiment in powersharing,
an intersection for manifold ‘‘fields of contention’’.
This may well democratize it and open it up to
new powers on the part of previous ‘‘outsiders,’’ but it
bears iterating that it might equally well serve the
interests of those in established sites of power (see also,
Hess, 2004; Jacobson & Soliman, 2002)

Clearly, there is a great deal of mobilization around
the patient—a flurry of activity that helps dispel any
homogenized and normative notions. And yet, there
arguably remains something naggingly monolithic in
this figure as construed by our apprehensions: some
taken-for-granted filament or lurking essentialism that
haunts our interpretative schema, and/or perhaps
shadows patienthood itself. Given this suspected monochromatic
spectre, it might behoove us to deconstruct
the category of the patient and probe for unexamined
dimensions. Alternatively, the argument might run that
despite its blatant diversifications, there is still something
irreducible about the patient—the task herein then
lies in teasing out, identifying, situating this quality. At
this time, both paths arguably beckon and challenge us.
Perhaps our analyses of patienthood(s) could benefit
from a critical detonation, an explosion, multiplication,
division, amplification, fragmentation, etc. of ‘‘the
patient’’ along the lines of the theoretical pluralization
of ‘‘the body’’ into bodies that shaped late 20th century
scholarship? At base, we are led to concede the question:
What, if anything, is essential about ‘‘the patient’’?