Assessing the impact of political structure and welfare regimes: exploring the development of the independent living movement in America and Britain

SLSP 3041 Sociology Dissertation

Assessing the impact of political structure and welfare

regimes:

Exploring the development of the independent living movement

in America and Britain

BA (Hons) Sociology

SID No. 200617048

Abstract

This dissertation uses the independent living movement

to explore the effects of political structure and welfare

regimes on social movements, specifically the Disabled

People’s Movement in the United Kingdom and United States of

America. This is done by exploring the key literature around

issues such as new social movements, disability culture and

identity, service provision, the postcode lottery effect, and

citizenship theorising, coupled with secondary qualitative

analysis of interview transcripts from key figures in the

1970s and 1980s. Throughout the project, the American

individualistic and multicultural approach can be seen, often

in contrast to the British focus on macro-social change and

solidarity, confirming the hypothesis that political

structure and welfare regime play a role in shaping the

development of social movements. The use of personal

narrative aims to use the lived experience of disabled people

in an attempt to balance the theoretical basis, and suggests

that despite differences in political structure, some

overarching disabling tendencies occur in both countries.

Nevertheless, this project provides only a snapshot view, and

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provides tentative generalisations; more work needs to be

carried out to explore further, but this cannot happen until

there is a complete archive of interview material available.

Contents Page

Abstract 2

Contents Page 3

Abbreviations and their meanings 3

1. Introduction 5

2. Methodology 8

3. The Independent Living Movement as a social movement 14

4. The development of Independent Living 22

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5. Using personal narratives 30

6. Conclusion 36

Bibliography 40

Appendices 46

Abbreviations and their meanings

DPM Disabled People’s Movement

ILM Independent Living Movement

CIL Centre for Independent Living

USA United States of America

UK United Kingdom

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SM Social movement

NSM New social movement

POS Political opportunity structure

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1. Introduction

This dissertation aims to analyse the influence of

prevailing political structure and welfare regime on the

development of social movements. In order to carry out this

project, I explore the development of the independent living

philosophy within the Disabled People’s Movements (DPM) in

the United States of America and in the United Kingdom that

began in the 1970s and 1980s. This is an interesting case

study, as the political context and values of the DPM differ

considerably in these two countries, and yet the independent

living movement (ILM) was successfully adopted and

reinterpreted in a different context. In its own right, the

DPM provides a useful case study for critically analysing

many areas of sociology, including social movement and

citizenship theories as will be explored here, because many

authors tend to ignore the experiences of disabled people or

categorise them too simplistically. This can be seen as an

extension of the disabling tendencies in our societies to

marginalise those who do not conform to dominant norms.

The social model has been a cornerstone of Disability

Studies, but is being re-evaluated as modern sociological

theories require ‘fluid’ approaches to concepts previously

taken as fact. Further plans for welfare cuts in the UK bring

a tangible dimension to the study; “the austerity measures

taken by EU member States have hit citizens with disabilities

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disproportionately hard, putting at risk fundamental rights

that the disability movement has achieved over the last few

decades” (European Disability Forum, 2012). Many disability

theorists agree that understanding the history and reasons

for the development of a phenomenon is important in trying to

shape its future; the source for the British transcripts is

titled ‘Disability politics: understanding our past, changing

our future’ (Campbell and Oliver, 1996).

It is important to clarify my understanding and use of

key terms, but due to limitations, this paper cannot provide

a comprehensive review of the complexities of these terms.

When discussing the DPM I employ a social model approach to

encompass the environmental and social barriers people with

impairments face in a disabling society. When talking about

the ILM, I refer to the right to adequate support to make

choices; some refer to this as ‘interdependent living’ but we

shall stick to ‘independent’. It is beyond the scope of this

project to evaluate the complexities of different

impairments, so ‘disability’ to include all impairments. Data

and conclusions drawn here are not representative of the

entire disabled population, rather that the ILM presents a

snapshot and tentative generalisations of the impact of

political structure and welfare regimes.

This project has been conducted on the understanding

that the USA and the UK may be similar in the global arena,

but there are some key differences when closer inspected. The

abbreviations ‘USA’ and ‘UK’ shall be used for ease but let

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it be noted that differences within the United States or the

United Kingdom are not incorporated. The USA has a unique

history of protest, social reform and welfare, with a focus

on individual rights, a free market, and self-reliance. The

UK places emphasis on political autonomy and democratic

participation over market values, and holds welfare provision

and collectivism in higher regard (Shakespeare, 1993a). These

frameworks have influenced disability studies; the

‘pragmatic’ American tradition of social psychology and the

realities of individuals compared to the material and social

focus of British Marxism (Meekosha, 2004).

1.1 Structure of the chapters

In order to investigate these questions, the second

chapter outlines the methodological approach taken in chapter

five, including the background, ethical and methodological

issues of qualitative secondary analysis with a reflexive

account of conducting the research. The methods employed were

the most suitable as a result of various limitations, and the

secondary qualitative analysis provides a different approach

with which to corroborate conclusions made in earlier

chapters. Chapter three is a literature review of the key

debates and authors, with a broader focus on the impact of

political structure on the DPM. American and British social

movement theories are explored, along with discussions around

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‘new’ social movements, complemented by a grounded discussion

of disability identity and culture.

Chapter four concentrates on the ILM and evaluates key

literature with a focus on the consequences of welfare

regimes, including the different reactions to oppression, and

solutions implemented to increase participation. Other key

topics are Charles Murray’s influence in shaping welfare

regimes, the issue of a ‘postcode lottery’, citizenship

theory and the problems involved with the notion of an

‘ideal’ citizen. Chapter five is where the qualitative

secondary analysis comes in, as interview transcripts are

critically analysed to explore the personal narratives of key

players in the 1970s and 1980s. The social model and academic

work in this area has been critiqued as too focused on grand

theory without enough consideration of the reality of

disability; this chapter hopes to counter this and provide a

robust account of the impact of political structure and

welfare regimes. Finally in the conclusion I summarise the

main debates and advise that the evidence indicates that

political structure and welfare regimes have played a role in

shaping the two ILMs. However this claim is tentative, as the

project looks only at a snapshot, and more work needs to be

carried out to explore the complexities of social movement

development.

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2. Methodology

This chapter introduces the methodology for this

project, including development of secondary qualitative

analysis, methodological limitations, ethical dilemmas,

sampling, and triangulation followed by a reflexive account

of the research undertaken. Secondary analysis and

qualitative analysis have been popular methods in social

sciences for years, but the field of secondary qualitative

analysis is a recent addition and still requires research

into a comprehensive guideline for this method. In order to

minimise limitations, extensive literature reviews have been

undertaken in order to develop my ‘intuitive component’

(Haynes and Jones, 2012).

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2.1 Methodological framework

The social model of disability sees ‘disability’ as the

disadvantage and discrimination people face as a result of a

society that does not accommodate people with certain

impairments; this project has been carried out with the

understanding that ‘facts’ are socially constructed and

shaped by power relations. The methodological framework

employed here assumes SMs are shaped by political culture and

there are key differences between the USA and UK; an American

focus on individuality and pluralism, and a British emphasis

on welfare and overarching social structure. To best analyse

these differences, this project uses triangulation; defined

as “the use of more than one method or source of data in the

study of a social phenomenon so that findings may be cross

checked” (Bryman, 2012, p.717) as it facilitates validation

of claims as well as deepening and widening understanding of

the topic at hand (Olsen, 2004).

Secondary analysis of qualitative data is defined as

“the use of an existing qualitative data set to find answers

to a research question that differs from the question asked

in the original or primary study” (Hinds et al., 1997,

p.408), but there has been a lot of debate around the

strengths, limitations, and validity of this method. The

became more popular in recent years, following the Economic

and Social Research Council’s (ESRC) decision in 2000 that

all public research should be made available to maximise the

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use of data; several other national and international bodies

have also followed suit (Ziebland and Hunt, 2014). Secondary

qualitative analysis can offer new strength to the body of

social knowledge through performing additional analysis,

applying new perspectives, or describing contemporary and

historical attributes of individuals, groups and societies

(Long-Sutehall et al., 2011). Despite limitations, it is

often more pragmatic to utilise secondary research as time

and resource pressures often do not allow for such thorough

primary research to be carried, out and therefore run the

risk of leaving out key information (Ziebland and Hunt,

2014). This approach is appropriate for researching rare or

inaccessible respondents; in this case people in different

parts of the world (Heaton, 2008). Analysing transcripts is

also highly efficient, as it allows the researcher to spend

time on rigorous analysis instead of the issues associated

with conducting the interviews.

There are two main perspectives on this method; on side

argues there are too many ethical, legal and epistemological

issues to re-use qualitative data, such as concerns with

ownership, copyright, the role of the researcher,

confidentiality, anonymity, and gaining consent for broader

use of data (Parry and Mauthner, 2004, 2005). On the other

hand, data is expensive to produce and should be available to

others, especially with guidelines from the ESDS on dealing

with the legal and ethical issues (Bishop, 2005). Approval

has been granted for this project by the University of Leeds

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Research Ethics Committee (see appendix one) and issues of

professional integrity, confidentiality, and data protection

have been discussed and approved for this project in line

with British Sociological Association standards (British

Sociological Association, 2002). There are a number of

professional and commercial organisations providing ethical

guidelines and codes of conduct, but ultimately the

responsibility has traditionally been placed with the

researcher (Corti et al., 2000). In the case of qualitative

secondary analysis, issues may arise with regards to

preservation of anonymity when it has been requested or

guaranteed for the respondents, but it is assumed this is not

an issue here as a result of the nature of the sources.

Another methodological consideration is to what extent

context is important; some academics argue secondary

qualitative analysis is inappropriate as the researcher needs

to build up a ‘cultural habitus’ about the specific research

area (Haynes and Jones, 2012); the original researcher will

have tacit information about the research and participants

(Anderson and Roy, 2013); and communication through body

language and speech is often not captured in transcripts

(Ziebland and Hunt, 2014). These claims have been refuted,

arguing this puts too much weight on the ability of the

primary researcher to correctly interpret the data, and is

‘anti-historical’ (Mason, 2007); there may be more than one

initial researcher, so data will have had to be

contextualised and interpreted by those not present (Heaton,

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1998); and all research has the potential to be shaped by

inaccurate or partial contextual information as a result of

interpretation (Haynes and Jones, 2012). Issues of

subjectivity and power relations also need to be taken

account of in the initial research process.

Before using this method, evaluations must be made about

the appropriateness of this methodology, if the original data

is open to interpretation, and to what extent the secondary

aims can differ without invalidating the research (Hinds et

al., 1997). An issue to be noted is that qualitative research

yields a lot of data and so not all the data will be in the

primary report, and topics may not be addressed the whole way

through; an issue encountered with the interview transcripts

(Hinds et al., 1997; Heaton, 2004). Some other issues

inherent to secondary data analysis also apply here,

specifically a lack of control over the original data

collection and choosing the sample.

The sampling used in this project was to a large extent

dictated by the amount of data available; the University of

California’s ‘The Disability Rights and Independent Living

Movement’ archive was an obvious choice as it has been

designed to capture the history and preserve the living

memory of the disability rights and ILM in the USA

(University of California, 2010). There were fourteen

interviewers who carried out over 130 interviews

collectively, and were all interested in disability issues.

Unfortunately there is no similar archive in the UK, which

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was very disappointing and one of the biggest disadvantages

for this project. Instead I chose to use the book ‘Disability

Politics: Understanding our past, changing our future’ by

Jane Campbell and Mike Oliver (1996), two well-known

disability activists, and members of the British Council of

Disabled People; the largest organisation of disabled people

in the UK. The book is a collection of interviews from twenty

nine disabled people concerned with disability politics, and

with a mixture of impairments, backgrounds and experiences.

There are a number of issues being debated in qualitative

sampling, including the ideal sample size, validity,

reliability, and generalizability of samples (Trotter, 2012).

These two samples were chosen as a result of the time,

availability, and content restrictions; I chose to focus only

on personal narratives from the 1970s and 1980s because over

forty years later there is a huge amount of information to

choose from and this time provides the best snapshot of the

differences in the American and British movements. Both the

Berkeley archive and the interviews presented in the book

have been ‘cleaned up’ and presented in a specific way;

ideally I would have liked access to the initial transcripts,

but because of the small scale of this project that was not

practical. It is important to note most of these interviews

are of a reflexive nature and were carried out often years

after the time frame in question. The issues such as changes

in perception of the events and the risk of important details

being forgotten were kept in mind, but as a result of the

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nature of this study it is understood that only a fraction of

the events have been captured.

Resources used in the literature reviews were found in

University of Leeds libraries, along with online archives

such as the Independent Living Institute based in Sweden and

the Disability Archive based at the University of Leeds. A

number of online journals were useful, including Disability

and Society, Disability Studies Quarterly, and the American

Association on Health and Disability. Further resources were

obtained by using Google Scholar and the search terms

“independent living”, “interdependent living”, “centres for

independent living”, “development of independent living in

the united states”, “development of independent living in the

united kingdom”, “social movement theory”, “disability

culture”, “Berkeley independent living”, “Hampshire

independent living”. The search results were limited to those

written in English.

2.2 Reflexive account

The research was carried out using supra-analysis; going

beyond the focus of the initial study in order to examine the

effects of the prevailing political structure and welfare

politics on the development of the movement in the UK and the

USA (Heaton, 2004). Qualitative content analysis was used to

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interpret the meaning of the interviews; coding categories

were derived from the text for the American interviews, and

existing categories were made use of for the British

interviews in the book (Hsieh and Shannon, 2005). The first

task whilst undertaking analysis was to narrow down the

sample from the Berkeley archive, as 131 interviews was too

many for the parameters of this project. This was

accomplished using criterion sampling during an initial read-

through of the interviews; some could be discarded quickly on

the basis of the content (Onwuegbuzie and Leech, 2007). The

goal was to obtain insights into the ILM, and so purpose

sampling was the most appropriate method; through this

process 44 transcripts were chosen for in depth

categorisation and summary. The second, more thorough,

reading yielded key concepts discussed to present a flavour

of the interviews; there were a lot of interviews to go

through, and with such a wide variety of topics there was a

long list of potential avenues to explore but many were only

discussed once. To counter this, the topics were organised

into broad categories, the transcripts read through once

again with these headings to hand, and made notes were made

on the relevant points.

The process for collating information from the book was

slightly different due to a different presentation of data.

Using critical case sampling, whereby samples are chosen that

bring into focus the phenomenon of interest, all of the

appropriate chapters and sub-headings in the book were noted

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down (Onwuegbuzie and Leech, 2007). Working within these

categorisations was both beneficial, as the data was already

organised, and limiting, as it was presented for a different

purpose. Qualitative research requires constant re-focusing,

re-examination, and re-drawing of boundaries, and so once the

data had been collected from both sources, the notes were

collated and put under categories that had emerged from this

process. When analysing and presenting the data in chapter

five, key themes are highlighted and extracts from the

transcripts used to support claims.

As already mentioned, this part of the project was very

time consuming; one of the most challenging issues was the

sheer amount of information discussed and the variety of

topics presented, which made it difficult to decide which

topics to focus on. Analysis of the data also proved

difficult as a result of the different formats, focuses, and

presentation. After completing this research, I would argue

there is a deficit of suitable raw data for this type of

study, but I tried my best at using what sources were

available despite the methodological drawbacks. The next

chapter explores some of the key literature regarding social

movements and disability culture to analyse the effect of

political structure on social movements.

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3. The Independent Living Movement as a social movement

The DPM is an interesting case study with which to

explore social movement theorising as a result of the

complexities of ‘disability’ as a unifying characteristic.

This chapter focuses on the wider topic of the DPM and

explores both American and British SM theorising, debates

around the existence, structure and function of the DPM, and

whether the DPM is a ‘new’ social movement. These theoretical

concepts are applied to the question of a disability culture

and highlight some key debates between American and British

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academics around what such a culture might look like, as well

as discussions around disability pride, a disability

identity, and the problem of essentialism. The nature of

these debates can clearly be seen within the social context

they work in; American multi-cultural and individualised

perspective shines through in debates around culture, and the

British focus on social change and solidarity is highlighted

in contrast. Social movements in each country are tied to and

reflective of the social structures and histories of that

particular society and this chapter presents a number of

examples highlighting the impact of political structure on

the DPM (Meekosha, 2004).

3.1 Social movements

Social movement theorising is a broad and complex area of

sociology; many of the terms are still debated and the

fluidity of SMs adds complexity. Early American SM theorising

focused on ‘overt’ political action and was concerned with

the issue of rationality. This was because the political

context was characterised by pluralism, legitimacy accorded

to organised groups, and relatively dispersed power; it

didn’t make sense for citizens to be working outside of the

system, because the system was supposed to give everyone a

voice. American theories such as resource mobilisation and

the ‘classical approach’ focused on individual instances of

protest and were concerned with participation. On the other

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hand, European theorising has taken a theoretical approach in

contrast to the American empirical focus, and explains SMs as

ideological forces and examines what they tell us about

culture and values (Byrne, 1997). The American approach aims

to answer ‘how’ and ‘when’ questions, whereas the European

approach is concerned with ‘why?’; however these theories

need to be updated, especially in regard to critically

evaluating the DPM, as they do not provide adequate

explanations (Beckett, 2006).

Recent debates about the development of the DPM, both in

America and Britain, have turned to the question of whether

or not it can be classified as a ‘new social movement’ (NSM).

This approach locates SMs in advanced capitalist societies

whereby knowledge is increasingly more important than

production, and NSMs are concerned with issues of identity,

culture and meaning (Langman, 2013). Specific topics under

debate include the appropriateness of calling the political

activities of disabled people a ‘movement’, whether the aims

of the DPM are in line with a NSM, the effects of

intersectionality, and the organisational focus. Put simply,

questions have arisen regarding the existence, structure,

function and aims of the movement, but there seems to be an

underlying assumption it would be a ‘good thing’ if it was a

NSM (Beckett, 2005). Alongside these debates, the social

model of disability has been called into question, with many

academics claiming it is no longer adequate; the role of the

body is overlooked and therefore cannot provide a full

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account of disability and the power relations at play. These

debates shall be evaluated later, but first some background

on the emergence of NSMs.

New social movements have been termed ‘new’ because of the

focus on breaking away from ‘old’ forms of political protest;

NSMs go beyond the traditional form of participation through

party politics or single-issue pressure group activity. The

DPM has been marginalised from traditional politics, and the

focus on making the ‘personal political’ mirrors NSM values

(Gilleard and Higgs, 2010). However, unlike NSMs, disabled

people often work in the margins not out of choice, but as a

result of marginalisation. NSM theory emerged to explain

movements based on issues such as peace, nuclear energy

crises, gay pride, and feminism that were not directly

related to class mobilisation; instead they were seeking

recognition for new identities and lifestyles, and members

were ‘full’ citizens able to engage in create formulations of

their identity (Polletta and Jasper, 2001). In this respect

the DPM differs; their identity has historically been imposed

on them by society and often continues to be. It is this

imposed identity that is at the root of debates about

intersectionality and a shared disability culture, which

shall be discussed later on, and will now be explored through

NSM theory.

The extent to which the Disabled People’s Movement

embraces NSM post-materialist values and goals is a

significant disagreement amongst academics. One of the goals

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of liberation movements, such as the DPM, is to widen the

concept of the ‘political’ to encompass personal, social and

domestic relations; a key concern is that the NSM model

cannot fully grasp this, due to the focus on normative goals.

Beckett (2005) explores some critiques about the ‘fit’

between the DPM and NSM theorising; from her own research,

respondents often prioritise change to the lived experience,

such as social and physical barriers, income, material needs,

and social security over post-materialist values like

identity and culture. These concerns also include struggles

around resource allocation, such as economic exploitation and

poverty, equal pay, better benefit systems, and challenging

the distributive logic of capitalism (Shakespeare, 1993a).

The focus of NSMs on redefining culture and lifestyle is

based on certain ideas of identity, which as will be

discussed later, is problematic for the DPM. However some

disability academics and activists argue a positive

disability identity and disability culture can be very

empowering and this is (or should be) one of the goals of the

DPM.

Another aspect of social movement theory to discuss is

political opportunity structures (POS) and how they influence

these ideas. The POS of the UK and USA may appear similar

when viewed in the global context, but there are some smaller

scale key differences. A country’s POS is made up of the

cultural and institutional arrangements within the political

system, and analysing this can allow social scientists to

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explain and predict variance in periodicity, style, and

content of SMs over time and political contexts (Meyer and

Minkoff, 2004). However POS theorising is very broad, with

academics focusing on different aspects; critics argue it is

in danger of soaking up and trying to explain every aspect of

SMs. A number of academics have developed typologies to

categorise POS’s; Kitschelt (1986) introduced the notion of

‘open’ or ‘closed’ political regimes; open regimes will have

more political parties, more flexible legislation subject to

public demands, facilitated access for new interests, and

procedures for getting new ideas through to policy forming

and consensus; ‘closed’ regimes are the opposite.

The British POS has been labelled closed and inflexible,

as there are few opportunities for SMs to form alliances with

political parties (Gelb, 1990; cited in Byrne, 1997). The

American system on the other hand provides ‘multi-level

openings’ as a result of their pluralist and federal

organisation. The UK also has a long-entrenched class

culture, mono-cultural elites, and is dominated by a single

metropolitan centre – London. The USA is racially segmented,

has multiple centres and elites, and the institutional

political tensions between federal states and the national

capital have led to decentralised planning (Meekosha, 2004).

Other factors that will affect this status are the state’s

control over economic resources and decision centres,

relative independence and authority in policy implementation,

and nature of the welfare regime.

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Along with POS, this project analyses welfare regimes in

the UK and USA; the most popular method for this is Esping-

Andersen’s (1990) typology, in which he studied 19 countries

and came up with three ideal regime types; liberal,

conservative, and social democratic. He places both the UK

and the USA under ‘liberal’ regimes; characterised by minimal

state provision of welfare, modest benefits, and strict

entitlement criteria, often with means testing and social

stigma. This typology has since been heavily criticised; to a

large extent, the role of gender, politics and public

services are ignored, and political economy researchers have

suggested it is more fruitful to study political regimes

instead, as these typologies do not take into account policy

or the politics underpinning them (Bambra, 2007). Another

criticism is that the UK is not so easy to categorise, as it

doesn’t fit neatly into one category; Taylor-Gooby et al.

(2004) suggest it is distinctive in its liberal market-

orientated welfare and majoritarian governmental system. They

also highlight the importance of New Labour abandoning the

social democratic approach to welfare in 1997 and moving

towards a market-orientated welfare state reform. These

debates can be further analysed by looking at discussions

around disability culture in the UK and USA.

3.2 Disability culture

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In recent years, there has been a move away from macro-

level theories towards micro analysis and issues of lived

experience, meaning and culture studies, emotions, movement

dynamics, media and information management, and personal

interactions (Jasper, 2010; Garner and Zald, 2012). Theories

are being dismantled and re-evaluated, with new theories

offering cultural and emotional explanations whereby SMs are

understood as composed of individuals and their interactions.

Academics are focusing on the micro-foundations of social and

political action, such as creativity, agency, culture,

meaning, emotion and morality (Jasper, 2010). Culture has

been emerging as an important theme since the late 1980s, for

example Swidler (1986) talks about a metaphorical ‘tool kit’

whereby actors can draw on meanings, beliefs, ideologies,

practices, values, myths, and narratives to develop the

movement. One of the critiques of traditional American and

British SM theories is that they focus on specifically

political factors; we need to also look at what SMs can tell

us about culture and values.

Culture has traditionally been discussed within the realm

of anthropology, and is commonly taken to mean everything

created by people; including knowledge, beliefs, art, law,

morals, customs, etc. (Peters, 2000). A number of core

sociological approaches have been used to explain culture;

for example structuralism sees culture as influenced by

institutions and organisations; poststructuralists focus on

interpretivism and culture as a contested terrain; and post-

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modernists may take a Marxist approach and emphasise

historical and sociological stimuli. It is beyond the scope

of this project to explore further the theoretical debates

around definitions of culture, so we shall turn now to the

debates around the idea of a disability culture in the USA

and the UK, focusing on issues of pride, intersectionality,

and essentialism.

The notion of a disability culture and disability identity

has come under scrutiny from all sides, revolving around

debates of anti-essentialism, intersectionality, inherent

cultural difference, and describing what this would look

like. Political structure has shaped debates; American

discussions have been framed within the notion of multiple

cultures and that culture need not equate to homogeneity or

consensus, whereas British academics tend to advocate for one

all-encompassing culture or none at all. This can be

explained by an American interest in the psychology,

identity, personal affirmation, and moral development of a

disability culture, and a British preoccupation with equality

in political and material participation (Meekosha, 2004).

History is important in shaping political structure and

values, and the American DPM follows in the tradition of

liberation and identity politics conceptualising SM members

as part of a minority status, stigmatised group, sub-culture,

or under-class. This has led to a distinction in the USA and

UK DPM’s; the British focus on a dichotomy of ‘impairment’

and ‘social barriers’, whereas the American movement

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transcends this binary and focuses on difference (Meekosha,

2004).

That disability culture is not widely understood or

defined may lead to confusion amongst disabled people and

subsequently they do not identify with it; something that has

caused much debate in this topic. One of the ways a

disability culture is set apart from other ‘minority’

cultures is that impairments may be painful, debilitating,

even fatal, and some people feel their ‘disabled identity’ is

something imposed on them; if not negative then at best seen

as a ‘fact’ to live with (Beckett, 2005, 2006). As a result

of the link between disability and poverty, some disabled

people will be struggling with issues of material inequality

as well as social and physical barriers, so celebrating a

disability culture may not be a priority (Peters, 2000). On

the other hand, there are also a number of arguments

advocating for a ‘disability pride’; the American political

culture of pluralism comes into play again and can be seen in

discussions of intersectionality and anti-essentialism,

whereby different contexts lead to a number of disability

identities and cultures. This argument sees these concepts as

‘fluid’, and links to Judith Butler’s (1993) feminist theory

on performativity, whereby social identity is created through

social interaction and is ‘performed’. These discussions

about identity highlight the effects of the American

framework and its resulting concern with complex multiple

identities and personal understandings compared to the

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British concern with social change. Issues of meaning and

representation have been highlighted in the British DPM, but

these concepts are underdeveloped and not explored

sufficiently, with the exception of Tom Shakespeare (1993b,

1996, 2004) and Jenny Morris (1991). They suggest a positive

disability can help to combat negative representations of

disability, and Shakespeare (1993b) talks about the

importance of the disability arts movement as a powerful tool

for changing social attitudes and overcoming difference.

Another key debate is how to conceptualise a disability

identity when people live “multicultural lives” (Peters,

2000, p.583) and intersections of gender, sexuality,

ethnicity, class, age, education shape how people see

themselves and interact with their environment. Some argue a

shared disability ideology is prevented by these differences;

it is beyond the scope of this work, but there have been many

criticisms of the DPM by groups such as women, LGBTQ people,

and ethnic minorities who feel marginalised within the

movement. Focusing on commonality and disability pride may

have advantages for individual and social change, but runs

the risk of marginalising ‘special interest’ groups

(Priestly, 1995). Again there is not space to explore

further, but a number of people have discussed ‘simultaneous

oppression’ or ‘double jeopardy’ whereby people face multiple

discrimination; they may not feel they fully belong to any

one group if they are always a minority (Priestly, 1995;

Vernon, 1999; Peters, 2000; Beckett, 2005). Some of the

29 | P a g e

criticisms of the UK DPM follow in this vein, arguing that

solidarity need not mean only one voice, and that the British

movement focuses too much on single issue politics;

highlighting once again the effects of political culture. For

many people, disability ‘flavours’ other parts of their life

and identity, and “the Disabled People’s Movement should not

proclaim commonality in the experience of disablement, but

that the reality of being a multiple Other does not

necessarily prevent shared alliances” (Vernon, cited in

Peters, 2000, p.593). The American argument is that a

disability culture can be conceived of as a ‘hybrid’ allowing

for individual consciousness and solidarity without “being

swallowed up by universal cultural patterns and norms” and

this culture of political solidarity can still take account

of issues of class, impairment, ethnicity, age, sex, etc.

(Peters, 2000, p.585).

Finally, there are questions around whether it is

problematic to identify an essential cultural difference

between disabled people and non-disabled people; assuming

someone is defined by their culture or group traits may be as

oppressive as refusing to acknowledge they are important

(Beckett, 2005). People will have different ideas about their

identity, impairment and how ‘different’ they are; assuming

essential differences exist was what led to the medical

model, disempowering welfare and the ‘othering’ of disabled

people (Putnam, 2005). On the other hand, as identity is

subjective and contextual, the ‘disability identity’ need not

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mean the same to everyone, and not everyone needs to identify

with it in order for others to enjoy the empowering aspects

of taking pride in a culture. Disability studies tend to

struggle against the status of ‘other’, without presenting an

alternative; disability culture allows people to define

themselves on their own terms and in a positive light

(Peters, 2000). These discussions have presented evidence

highlighting the impact of political structure on the DPM;

the American conceptualisation of disability culture as

multifaceted and prioritising individual experience, and the

British focus on solidarity and attempting to encompass

everyone. The next chapter considers the development of the

ILM and in response to welfare regimes and citizenship

theorising.

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4. The development of Independent Living

This chapter focuses in on the independent living movement

and looks at the development in the USA and UK to consider

the influence of welfare regimes. It analyses the ILM in

response to the oppression faced by disabled people, and

solutions adopted to increase participation, specifically the

American anti-discrimination laws and British welfare

support. Other key topics include the impact of Charles

Murray, an evaluation of ILM services, and the issue of a

‘postcode lottery’ to assess the role of welfare regimes.

Finally, citizenship debates provide theoretical analysis,

specifically the exclusionary notion of the ‘ideal citizen’.

Disability has historically been viewed within a negative

framework, explained by religion, superstition, myths, and

curses whereby impairment is the cause and the logical

solution is to cure or eradicate it. When this is

unsuccessful, disabled people are often marginalised and seen

as not ‘normal’, incapable of participating in or

contributing to the community, and therefore need ‘care’

(Barnes, 2004). Both the UK and USA ILMs focused on

emancipation from paternalistic and oppressive social

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practices, often characterised by institutionalisation and

charity, but political contexts and welfare regimes

influenced the development of each. The American ILM was to a

great extent a reaction to the oppression they associated

with welfare-based ‘solutions’ to disability, and by the

1970s disability activists were calling for civil rights in

the form of anti-discrimination legislation (Bagenstos,

2004). The attitudes towards welfare coupled with American

values of a market economy and self-reliance made anti-

discrimination laws more appropriate, as they enabled

disabled people to make a living on their own. The British

approach, shaped by positive views towards welfare, called

for financial support and more control to enable disabled

people to participate in their community; however disabled

people in both countries face issues of stigmatisation

(Evans, 2002).

The idea of an ‘underclass’ has been discussed by a number

of key academics in sociology; for example Marx’s (1848,

p.20) “’dangerous class’, [lumpenproletariat] the social

scum”, and Bauman (1998) described them as the people in

society without a role and who are making no useful

contribution to society. During the 1960s in America welfare

became increasingly easy to claim, with relaxed

conditionality, income transfers, and increased social

security programmes for the poor (Magnet, 2005). Charles

Murray (1984) believed that as a result of this new welfare

scheme, ‘perverse incentives’ made it profitable for the poor

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to act in socially and morally destructive ways and these

subsidies had encouraged the poor to join or remain dependent

on benefits. Murray’s solution was to cut welfare altogether.

In the early 1980s, British Prime Minister Margaret Thatcher

declared public spending too high, and Murray’s ideas spread

to the UK. However this notion has been criticised as not

taking into consideration socio-economic factors, and in this

case the impact of environmental and attitudinal barriers

disabled people face in finding employment and full

participation.

Nevertheless, Murray’s ideas had important consequences on

the development of the British and American ILMs. American

activists working within a culture of individualism and

personal responsibility encouraged disabled people to move

away from a dependent welfare mentality and fight for the

right to employment (Bagenstos, 2004). Right wing activists

criticised welfare as creating a dependency culture, and

those on the left took a Marxist approach criticising welfare

for ‘pacifying’ disabled people; both sides called instead

for civil rights, which eventually lead to the Americans with

Disabilities Act (1990). The British ILM took a different

approach; they argued people needed proper support, provided

by society, to enable them to take up an active role in the

community, but Murray’s legacy continues to influence British

politics as cuts to welfare provision continue to be

announced. The different approaches to the issue of ensuring

independence mirror the welfare regimes of the UK and USA,

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suggesting context is a strong influence, and this can also

be seen in the type of support provided by the ILM.

4.1 Developing differently

The type of support that developed from the ILM further

illustrates the power of political structure. The British

movement sees direct payments to pay for personal assistance

as a right for disabled people, whereas the American movement

sees their right as the right to participate as a consumer

and paid employee in the capitalist economy. Direct payments

have the potential for achieving independence through high

levels of choice, control and a better quality of life

(Barnes, 2007). They are managed by the local authority and

provide cash for people to manage the services they need,

including personal, domestic, and social support, as well as

technical aids and equipment. However direct payments only

work when in collaboration with wider social change and other

support services, including advertising, recruitment of

personal assistants, and management training. A drawback here

is that not everybody will feel comfortable organising their

support, so alternatives are needed too (Evans, 2003;

Bagenstos, 2004). The goal is to change social structures so

disabled people are seen as responsible and in control,

rather than cared for; reflecting the influence of political

structure and welfare regime in the UK.

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In the USA, where the redistribution of wealth is such a

hotly debated topic, attitudes towards welfare have tended to

be negative, and the ILM has chosen to empower people

differently. The American philosophy of ‘doing it yourself’

has shaped services; instead of a ‘hand-out’, the CILs offer

peer mentoring, employment advice, and transport assistance

(National Centre on Independent Living, 2013). This approach

has been critiqued by various British disability studies

academics, as well a few American authors, for example Samuel

Bagenstos (2004) argues that antidiscrimination laws are

insufficient as they are unable to eliminate deeper

structural barriers. These laws only target superficial

issues and offer short term solutions, as they are difficult

to implement and monitor and subsequently do not effect

social change. As a result of the time and word limitations

of this project, an in-depth analysis of the movement’s

approaches to accessible public buildings and other

infrastructure was not possible, but it is noted that this

might provide a different picture.

An issue facing both countries ILMs is the ‘postcode

lottery’ effect, whereby different locations provide

different levels of support. One of the main causes of this

is that Community Care (Direct Payments) Act 1996 (UK) and

the Personal Responsibility and Work Opportunities

Reconciliation Act 1996 (USA) are too vague, which leads to

local authorities (UK) or states (USA) implementing

programmes that best suit them. In the UK, one of the main

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issues is that the legislation did not make it mandatory for

local authorities to provide cash instead of care, and

paternalistic ideas about disability coupled with confusion

led to different quality of services. An example is what

people were allowed to use their money on; some CILs allowed

people to spend it on holidays and leisure, whilst others had

strict rules on using the money solely for practical personal

care (Priestly and Jolly, 2006). The type of support

available is therefore dependent on where someone lives and

the way their local authority has interpreted the law. This

is further compounded by a paternalistic unwillingness of

many authorities to hand over control to disabled people

(Evans, 2002). Although this is an issue, the UK continues to

provide social support for disabled people as this is part of

the political culture; the USA, which does not have the same

fondness for welfare, reacted differently to this issue.

When the American Personal Responsibility and Work

Opportunities Reconciliation Act (1996) came into force it

had a massive effect on the restructuring of welfare as the

state was no longer legally obligated to provide support.

States were now responsible for the entire process of

administering welfare, which led to the same ‘postcode

lottery’ effect as the UK faced. There are a number of

theories focusing on different pressures that attempt to

explain this; pressure from the constituent, institutions,

paternalism, and resource pressure (Fellowes and Rowe, 2004).

Constituent pressure relates to changes in how liberal the

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state is, and the composition of constituents; for example

studies show that welfare declines in ethnically diverse

states. Institutional pressures suggest welfare generosity

declines when there is increased competition for democratic

seats, more republican seats, or the state’s constituents

become more conservative. The paternalism theory follows in

the vein of Charles Murray and sees the government as using

welfare provision in pursuing a moral agenda; for example for

limiting ‘immoral’ reproductive behaviour and welfare

dependency. Finally resource pressure focuses on the state’s

financial capacity to provide welfare, but states will also

react to neighbouring welfare provision to avoid attracting

welfare ‘scroungers’. The variety of different pressure

points can be seen as an effect of the political structure of

the USA; the pluralist and decentralised government means

there are many factors influencing welfare regimes. It is

interesting that despite different political cultures and

welfare regimes that the issue exists in both countries;

however the nature of the problem reflects the political

structure. I now turn to citizenship theorising to explore

issues of ‘rights’ and the exclusionary nature of the ‘ideal

citizen’.

4.2 Citizenship

The discussion of rights needs to be located within the

framework of citizenship theorising, as different

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perspectives provide different ideas around the rights

citizens are entitled to. The USA is well-known for their

strong emphasis on civil rights; shaped by political

multiculturalism and reproduced in the Declaration of

Independence, whereas the UK focuses on social rights; under

different governments this may be positive or negative.

Situating the issue in this way requires governments to be

part of the solution by using public resources to ensure

fuller inclusion; the ILM also calls for a larger part in

this process and control over the direction of related policy

(Prince, 2004). However there are debates as to how

important concepts of citizenship actually are; a Marxist

critique says giving people rights is merely a temporary

solution to placate society and prevent a revolution.

Mannheim is concerned with whether the concept actually makes

sense, and Weber rejects the idea of universal rights as

achievable, because he sees society as made up of groups that

will use whatever ideology available to legitimise their

authority (Turner, 1993).

There also are arguments that citizenship itself is

inherently exclusionary; both as a result of its origins and

the abstract notion of the ideal citizen. Ancient Greeks were

the first to conceptualise an individuals’ relationship to

society in terms of citizenship, and Aristotle believed

citizenship was a core element of what it meant to be human;

yet many are excluded from this status, and a common issue is

how to deal with inequality and the role of the state. A

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criticism of classical theories is that they fail to engage

with issues of inequality and instead just ‘manage’ it.

Following in this tradition, the neo-liberal approach sees

the state as a ‘night-watchman’ merely keeping the peace; in

a free market economy inequalities are inevitable and even

desirable, and altering this is an infringement on civil

rights (Beckett, 2006). This approach to citizenship is

clearly encompassed in the American way of thinking where

debates around redistribution of wealth are a thorny issue

and there is a strong ethic of personal responsibility; it is

also evident in the support offered by the ILM.

Social liberal thinkers, such as Rawls and Marshall,

take a more optimistic approach to inequality advocating for

a safety net to take the edge off the worst cases of poverty,

however in a society built on educational meritocracy, some

inequality is legitimate; this more closely fits the British

attitude to disability. A criticism is that it is too

normative as we do not, and arguably never will, live in a

meritocratic society; evidence can be found in the Department

for Education and Skills (2003) report highlighting the gap

in higher education participation. Marshall has also been

criticised for his ‘woolly’ definition of social rights that

lacks clarity, although it has been argued his biggest flaw

is that he overlooks power differentials that affect an

individual’s success (Beckett, 2005). Disabled people often

face a host of barriers that put them at a disadvantage,

including segregated ‘special’ schools, a lack of proper

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equipment and support in mainstream education, environmental

barriers, and negative social attitudes including assumptions

about their capabilities; and these barriers continue into

employment. The focus on paid work as a pre-requisite for

welfare support and full citizenship status, both in America

and Britain, disadvantages disabled people and often leads to

the label of a ‘defective’ or ‘failed’ citizen; excluding

disabled people from the ideals of citizenship. The

philosophy of the ILM is that disabled people are able to

participate in society as ‘full’ citizens, but the right

support is needed in conjunction with structural changes.

Complex issues of disability and employment cannot be

discussed here, but for further information, see Colin

Barnes’ work (for example 1991, 1999, 2003, 2012) as focus on

paid work is an important aspect of the ideal of citizenship.

Based on classical liberal ideas of citizenship, the

‘ideal’ citizen is modelled after an abstract and disembodied

individual, encompassing reason and rationality (Lister,

2003). Citizenship according to these values is inherently

masculine as a result of their assumed reason and detachment

from the body and emotion (Yeatman, 1994). Women, ethnic

minorities, LGBTQ people, and disabled people are therefore

‘othered’ as they are defined essentially by their body,

sexuality and emotions; unable to “attain the impersonal,

rational and disembodied practices of the model citizen”

(Yeatman, 1994, p.84). Evidence of this can be seen in the

development of Marshall’s (1950) social, political and civil

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rights; women got the vote years later and still remain

underrepresented in politics, women were not allowed to join

the army, there was no protection against rape-within-

marriage, and women did not have the same social status as

men did. These delayed or denied rights are even worse for

disabled populations, both in the USA and the UK despite

differences in political structure. This can be explained by

the focus on the body; the ideal citizen is physically

perfect and is also able to transcend their body and emotions

in order to become reasonable and therefore engage in

political discussions. Groups that are ‘othered’ are often

left out of nation and national identity building (Lister,

2002).

Participation in one’s political, economic and social

environments is another important aspect of citizenship and

many theories discuss the rights and also the

responsibilities of a citizen. The notion of a social

contract has been taken up by a number of theorists, whereby

the rights one receives is relational to their contribution

and participation in society. This poses a threat to the

status of disabled people, as society tends to marginalise

this group on the basis of assumed dependency and judgements

about people’s capabilities. Many disabled people are not

living at the same standards as other citizens and face a

host of barriers; outdated ideas of biological inferiority, a

focus on a meritocracy but no additional support, and a focus

on the cost not benefits of such a change. Participation in

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the political is “as rare as it is important” (Bellamy, 2008,

p.3) as public rights and duties are often linked to the

political sphere, and involvement in the democratic process

is crucial to maintaining a fair society, as “democratic

citizenship changes the way power is exercised and the

attitudes of citizens towards each other” (Bellamy, 2008,

p.11).These barriers are experienced in both the UK and the

USA, but the political culture has shaped which elements the

ILM focuses on; the American movement chooses to focus on the

responsibilities of disabled people to contribute to their

society, whereas the British movement focuses on supporting

people first in order to enable them to participate.

This chapter has analysed the impact of political cultures

and welfare regimes through an analysis of the development of

the ILM and theoretical discussions of citizenship. The

American movement saw the institution of welfare as

oppressive and advocated for anti-discrimination laws based

on the notion that disabled people have the right to make it

on their own in the free market economy, like everybody else.

The British movement on the other hand saw welfare as

necessary to support disabled people’s participation, and

called for financial support to control their own services.

Welfare regimes led to different reactions to Charles Murray;

activists in the USA encouraged people to move away from a

welfare dependence mentality and encouraged people to be

‘independent’; whereas the UK movement understood

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‘independence’ to mean ‘interdependence’ and called for more

welfare support to help those who needed it.

The type of support these two movements developed

clearly shows how context shapes SMs; with a strong

republican party, American activists called for support such

as peer mentoring and advocacy to enable access to paid

employment. In the UK where welfare is well established,

activists call for control over the support they receive.

These differences can also be explained in terms of the

different cultural values; the American focus on the

individual chose anti-discrimination laws which target the

specific person and event, whereas the British macro-level

approach aims to change the way social support is controlled

to enable participation. Finally, the USA chose to focus on

the responsibilities of a citizen, and the UK focuses on the

rights people have for support; the next chapter explores

personal narratives as a means to critically evaluate these

conclusions.

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5. Using personal narratives

Previous chapters have taken a theoretical approach to

evaluating the effects of political structure and welfare

regimes on the development of the DPM, and specifically the

independent living philosophy. This chapter turns to personal

narratives to critically evaluate previous conclusions, using

interview transcripts to explore what key players at the time

thought about independent living. The reasoning behind using

personal narratives is to counter challenges that the social

model and much academic work is too focused on grand theory

and not enough consideration is given to the lived

experiences of disabled people. This chapter also aims to

explore debates around the terminology and structure of the

ILM in UK and USA, as these interview transcripts with key

players will serve to measure the reality of these

theoretical claims. First there is a discussion of the

benefits and key debates around the use of personal

narratives in Disability Studies, followed by analysis of the

interviews, and finally some methodological issues and a look

to future projects.

5.1 Justification

The use of personal narratives has a long history within

the social sciences, but has often ignored disabled people as

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an appropriate subject group. Within disability studies the

use of subjective accounts has become popular, but there is

still much debate and concern about the usefulness and

reliability of these methods. Here some of these debates are

explored, but I conclude that in conjunction with the two

previous chapters that take on a social theory base, this

chapter helps to ground the claims made and provide a fuller

account. There is a complex relationship between the

individual and society and how to best research this

relationship; one the one hand disability is experienced

through the structural, environmental and attitudinal

barriers people face, and on the other hand, ignoring

individual experiences risks marginalising legitimate

concerns and understandings of the effects of these barriers

(French and Swain, 2006). Disabled people have historically

had to remain silent whilst others recounted their

experiences on their behalf; “history is owned and documented

by those in power, and invisibility and silence are

cornerstones of oppression” (French and Swain, 2000, cited in

French and Swain, 2006, p.384). With the rise of the ILM,

there are now spaces for disabled people and their families

to express their experiences along with their personal and

social identities.

Creating a space for personal narratives allows disabled

people to be more than just victims; they can be survivors

and critics of their oppression as well as highlighting their

ability to resist and fight back, which directly contradicts

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most conceptions of ‘disability’ (Atkinson and Walmsley,

2010). The recounting of narratives may also allow people to

locate their experiences within wider social contexts, for

example understanding why they were institutionalised. It

also provides a lens with which to better see complexity and

difference such as identities, life pathways, and choices,

which is important as disabled people are too often lumped

together as homogenous. Moreover, personal narratives can

help make sense of accounts purely based on facts and aid

understanding as well as encouraging the researcher to

challenge their own preconceptions (Nind, 2008). Oral

histories can be a powerful mechanism with which to challenge

the accepted histories shaped by unequal power relations and

add details that cannot be found in abstract accounts. They

are particularly useful in this type of research to assess

the lived impact of policies and macro-level change.

However, subjectivity may become an issue within this type

of research. The respondent may have a different account of

‘facts’ as a result of memory or their own interpretations of

the situation; for example being told they were going to

‘school’, when they were in a hospital. The researcher also

complicates this as their interpretation is subjective and

framed by their own values and understandings, as well as

potentially (un)intentional steering of the conversation. For

this reason it is important to acknowledge the bias of the

researcher and the power relations influencing the situation.

Other barriers include communication, ethical issues, and

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barriers to accessing respondents. One of the ethical issues

under debate is the risk of taking advantage of people’s

suffering and exploiting it for ‘debating fodder’ (Atkinson

and Walmsley, 2010). Finally there is an issue that when

recording and transcribing the interview, the subtleties of

body language and conversation styles may be lost.

5.2 Analysing personal narratives

As a result of the different formats of the sources used,

the range of information was quite varied; the American

transcripts were interested in an assortment of topics,

whereas the British book was focused. Some of the themes in

the Berkeley transcripts included organisation of the

movement, political action, coalition building, issues with

competing ideas, institutionalisation, goals of the movement,

government funding, and the physical barriers faced. The

British movement, as noted, is a compilation of interviews

organised within the structure of the book; some of the key

topics in the chapters I chose to look at included; policy,

special education, employment, experiences of social

attitudes, and accessibility barriers.

The American interviews that discussed the organisation of

the ILM and CILs discussed the chaos involved in the

beginning as a result of the unexpectedly quick growth; much

of the movement and political action was reactionary.

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Ellison’s theory of citizenship provides a theoretical

explanation; power differentials involved create a process of

defensive and/or proactive engagement. He defines defensive

engagement as being the activity of “those lacking access to

relevant power networks who find themselves engaged in

efforts … simply to preserve existing interests and

entitlements” (Ellison, 2000; cited in Beckett, 2005, p.418).

This can be seen here where Billy is talking about the

Rolling Quads’ first political action:

“It didn't really get serious until—Ronald Reagan was governor at the time.

Ronald Reagan decided he wanted to close the program down.” (Billy

Charles Barner, USA)

Another issue discussed by these activists was

difficulties with a decentralised government and challenges

with bureaucracy, which obviously is different to British

experiences of a largely centralised government, although

bureaucracy was still a barrier. Herbert Leibowitz (USA)

explains how disabled people had to ‘pass’ a test to be

labelled ‘disabled’ in order to receive any benefits or

support, something that has arguably not changed much and

occurs in the UK as well. Brenda Premo (USA), working in a

government office, recalls how they went about defining who

was ‘severely disabled’ and she reflects that the focus was

on administrative processing rather than outcomes; again

something still around in both the UK and the USA. In the

British book by Campbell and Oliver, chapter three highlights

some of the policy issues faced in the beginning, including

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some of the policy failures; for example many people did not

receive the benefits they were entitled to and had to manage

with little or no support. The situation of disabled people

both in America and in the UK appears to be fairly similar in

terms of institutions and marginalisation, suggesting that at

times disabling social structures and practices overrode

subtle differences in political structure and welfare

regimes.

Despite institutional similarities, coalition building

illustrates some differences between the American and British

political structure, as it highlights the multiculturalist

side of the American political culture. At the beginning of

the USA movement there were a lot of smaller single-

impairment groups, and over time some grouped together whilst

others chose to remain as they were. There were a number of

benefits to coalition building highlighted, including

networking, supporting one another, campaigning, and

motivation, however a number of people discussed the

difficulties they faced; for example trying to accommodate

all impairments and ensuring representation from all groups.

There were also times people were left out of the larger

picture, for example Anita Baldwin expresses her shock at a

labour strike and picket line outside the CIL by people who

felt their concerns were inadequately addressed. The British

transcripts, on the other hand, suggested the UK focus was on

the movement as a whole, although there was not much said on

the topic.

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Institutions played an important role in developing

independent living, and a number of American respondents

discussed the conditions of the residential homes and

institutions, mostly describing the smell, squalor, violence,

and abuse:

“Something out of Dante’s Inferno” (William Bronston, USA)

A couple of the British interviewees remember their time

in ‘special’ schools; all of them similarly negative and

traumatic. Joe Hennessey (UK) remembers being sent to London,

only being allowed home once a year, and the trauma of having

to go back after the holidays. Ann MacFarlane (UK) describes

how frustrating it was living in an institution because she

was often left in bed when she could have gotten up if a

nurse had helped her. A number of respondents also highlight

the attitudes towards them; being told they were ungrateful,

childish and incapable. Barbara Lisicki (UK) describes her

experience as:

“An incredible regime of awfulness and torture”

However, Henry Bruyn (USA) talked about the positive

impact of the Cowell Student Health Service as it allowed

students who would otherwise have had to skip the year to

stay in the on-site ward and have their books and work

brought to them. John Evans (UK), one of the first British

independent living activists, also has a positive word about

the residential home he stayed in:

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“There were lots of things happening at Le Court…disabled people were

actually taking an active role in the running of the home and doing all sorts

of things”

Moving on to the goals that people envisioned for the ILM

and DPM in America, there is a lot of talk about having a lot

more to do; Eric Dibner (USA) points out that it takes money

to implement equality such as policy and antidiscrimination

laws, and he voices a concern over apathetic ‘young folk’. He

goes on to pose the question of how society can give disabled

people the rights they deserve, without making it a hand out;

although this cannot be analysed too far because it was only

a passing comment, this reflects the aversion to welfare

present in the American welfare regime.

These interview transcripts have hinted at some of the

conclusions made in earlier chapters, but further work with

complete transcripts needs to be undertaken in order to fully

evaluate the link between the theoretical and lived

experiences. As a result of the lack of raw interview

transcripts coupled with resource limitations, further

analysis could not be completed. One of the biggest issues

was the lack of appropriate sources, as the Berkeley

interviews covered a range of topics but not in-depth enough

for this project and the lack of similar archive in the UK

was also a major drawback. These issues can be explained as

common limitations of using secondary research, as there was

no control over data collection and therefore this project

was limited by the differences in research goals (Bryman,

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2012). During the research and analysis stages, some

respondents showed evidence of influence from the political

structure, but as these interviews were rather short and

often not corroborated by others, it was not possible to make

firm conclusions. Despite these drawbacks, in the future this

project would benefit from more time and money whereby the

researcher could interview some key players and possibly

begin setting up an equivalent of the Berkeley archive in the

UK to aid with similar forthcoming projects. For this reason,

I do not consider this area of the research unsuccessful, but

instead it has highlighted the need for further information

in order for deeper and analysis to be executed.

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6. Conclusion

The aim of this project was to explore the effects of

political structure and welfare regimes on social movements,

using the ILM as common ground in both the American and

British Disabled People’s Movements to do so. Different areas

and debates have been addressed, including NSM theorising,

disability culture, the effects of Charles Murray, the issue

of a postcode lottery, citizenship theorising, and the use of

personal narratives to corroborate these theoretical

conclusions. These debates and the conclusions drawn will now

be reconsidered in detail, followed by overall conclusions, a

reflexive account of this project, and suggestions for the

future.

6.1 Key conclusions

The intellectual framework of this project rests on the

assumption it is society that disables people with particular

impairments, through environmental and social barriers,

rather than the problem being placed at the individual or

medical level. It also rests on the premise that there are

subtle but important differences in the development of the

DPM in Britain and America, and uses the independent living

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movement to explore how political structure and welfare

regimes may account for these differences. This project

provides but a snapshot of the movement, and limitations to

the scope of the work have been kept in mind.

To begin with, there are difficulties categorising the

United Kingdom as a specific welfare typology, which makes

the POS a more appropriate method with which to evaluate

these two countries. The ‘closed’ POS of the UK, as a result

of a number of factors previously outlined, has had a

noticeable effect on the development of the independent

living movement. As a result of this structure, the ILM has

had to focus on macro-level societal changes in order to get

their voice heard, and the movement has had to present a

unified front to the government to be taken seriously. The

impact of this can be seen highlighted against the ‘openness’

of the USA; because of their different political structure

the ILM has developed very differently. The American movement

has a lot more sub-groups, and change is focused on anti-

discrimination laws in order to protect the individual in

specific circumstances.

These differences can also be seen in the approaches

towards a disability culture; British academics have tended

not to focus on this topic because there are too many

difficulties with intersectionality, different lived

experiences, and the spectrum of different impairments,

making a unified culture improbable. The American ILM again

reflects the political structure; they have approached this

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topic with the idea that pluralism is not a bad thing, and

consequently the USA movement has argued there are multiple

disability cultures. It is debates such as this that bring

into focus the impact of political structure, as the

conceptualisation of a shared culture has real effects on the

lived experiences of disabled people; the British desire for

solidarity and the American appreciation of multiculturalism

shapes the ILM and disabled people’s identity.

The development of the independent living movement can

also be explained by the welfare regimes; the American

movement felt the welfare system was both oppressive and

paternalistic, and continuing to placate disabled people with

welfare was unacceptable. The ILM, influenced by Charles

Murray and his ideas around welfare dependency, consequently

rejected welfare and turned instead to ‘doing it themselves’

and taking personal responsibility by joining the paid

workforce. The political structure in the USA facilitates a

strong market economy and the ‘American Dream’ of self-

reliance shaped the services provided by the ILM; not welfare

hand outs but instead advocacy, support and peer mentoring.

These findings are supported when exploring citizenship

theorising; the American neo-liberal approach to rights and

duties has played a role in shaping the services provided by

the ILM; working within the premise that inequality is

justified in a market economy, support aims to help disabled

people deal with the effects, rather than changing the social

structure.

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The impact of these differences can be seen in the fact

the UK adopted the philosophy of independent living, but

implemented a completely different strategy. With a strong

emphasis on welfare, the UK ILM continued to work within

existing social structures but advocated for changing the way

welfare support was delivered. Again this attitude of

changing the larger elements, in this case choice and control

for disabled people through direct payments reflects the

political structure and welfare regime of social

responsibility. The British approach to citizenship, of

providing a safety net to those at the bottom of the scale,

is clearly outlined in the ILM decision to maintain welfare.

The fact the same philosophy has developed quite so

differently strongly suggests that political structure and

welfare regimes play a large role in shaping social

movements.

However, research into the interview transcripts

suggests barriers such as bureaucracy and the process of

labelling and defining disabled people was an issue faced in

both countries. This indicates that although political

structure and welfare regimes do play a role in the

development of SMs, they are operating within societies with

the same disabling social mechanisms. The issue of the

‘postcode lottery effect’ in both countries also provides

evidence of this, although the responses to it are shaped by

welfare regime and political structure. After exploring the

effects of political structure and welfare regimes on various

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aspects of SMs, the Disabled People’s Movement, and the ILM

in particular, there appears to be evidence that these

structures do shape SMs. However this conclusion is not

likely to be the entire explanation, and further work needs

to be done in this field. There are larger debates around the

impact of the agency of individuals to be explored, along

with other nuanced accounts of the differences in the UK and

the USA. This project has provided a snapshot overview which

only allows for a tentative conclusion that there is a link

between the openness, (de)centralisation of the state,

compilation of citizens, culture and values and the effects

this has on the development of SMs.

6.2 Reflexive account

The principal barrier this project faced was access to

research material for the chapter on personal narratives, but

this was to an extent overcome by coupling this with

extensive literature reviews and analysis of different

aspects of SMs. Having completed this project, I believe

there is a lot more work to be done in this area in order to

fully grasp the complexities. One of the core concerns for

Disability Studies in here is to build on the information

available with regards to interview transcripts to better

explore the lived experiences and real events in the

development of the movement. The Berkeley archive is a useful

starting point and the UK would benefit greatly from a

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similar resource, but there is still insufficient information

to carry out a thorough project. Looking to the future, I

draw on work from Meekosha (2004) who suggests that although

the link between political culture, national political

institutions, and national scholarly orientations are

important, disability studies in the West tend to operate

largely isolated within their comfort-zone. In order for

disability studies to progress and develop a global

disability culture or academic disability awareness, it is

important to take note of other countries, from all over the

world, as they might have interesting and different

perspectives.

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Appendices

Appendix 1: Ethics Form

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