1

A Working Social Model?

Disability and Work in the 21st Century

Colin Barnes

December 1999

(Paper presented at the Disability Studies Conference and

Seminar, Apex International Hotel, Edinburgh (9 December 1999).
 2

Introduction

There is little doubt that during the latter half of the twentieth
century our understanding of disability and the complex process of
disablement have been transformed. Since the emergence of the
international disabled people's movement in the late 1960s,
traditional individualistic medical explanations for the various
economic and social deprivations encountered by disabled people
and their families have gradually given way to a more
socio/political account widely referred to as the 'social model of
disability'. In contrast to the earlier more orthodox views the social
model centres on environmental and cultural factors as the primary
cause of disabled people's marginalisation. Of particular concern
for disabled people and their organizations has been the systematic
exclusion of people with accredited impairments from the world of
work (UPIAS, 1976; Finkelstein, 1980; Oliver, 1990; Barnes,
1991; Abberley, 1996, 1997).

This paper will explore and evaluate the relationship between the
social model of disability, work and politics. It will be argued that
within a social model framework the concepts disability and work
are inextricably linked, that recent policy developments in the
employment field can have only a limited impact on the
employment problems of disabled people, that meaningful change
is possible only through a radical reformulation of the meaning of
work, and that the foundations for this reformulation have already
been laid.
 3

Work and the Social Model of Disability

In contrast to recent suggestions to the contrary (Barnes, H et al.,

1998), the relationship between disabled people and employment
has been a central concern of the disabled people's movement and
advocates of the social model of disability since its inception way
back in the 1970s. For example, when formulating the
'Fundamental Principles of Disability' (1976), the Union of the
Physically Impaired Against Segregation (UPIAS) stated that:

'In the final analysis the particular form of poverty

principally associated with physical impairment is caused by
our exclusion from the ability to earn a living on a par with
our able bodied peers due to the way employment is
organized. This exclusion is linked with our exclusion from
participation in the social activities and provisions that make
general employment possible' (UPIAS, 1976; 14 (emphasis
added)).

This insight has provided the stimulus for the development of the
social model of disability and a variety of studies which centre on
the way society is organized to the detriment of people with
perceived impairments and their families. It is notable here that
although the UPIAS were concerned primarily with people with
physical conditions, subsequent analyses were extended to include
all forms of perceived impairment regardless of cause. This was:
 4

'in recognition of the fact that all physical conditions have

psychological implications and that all intellectual
impairments have physiological consequences. Also, those
labels are generally imposed rather than chosen and that they
are politically and socially divisive (Barnes, 1999; 577).

It is important to remember too what is actually meant by the

social model of disability. Mike Oliver first coined the phrase in
1983 to reflect the growing demand by disabled people and their
allies for:

'nothing more fundamental than a switch away from focusing

on the physical limitations of particular individuals to the
way the physical and social environments impose limitations
on certain groups or categories of people' (Oliver, 1983; 23).

Since then both activists and writers from within and without the
disabled people’s movement have written much about the social
model. The result has been that the social model has been a, if not
the, major catalyst for the increasing politicization of large
numbers of disabled people and their allies throughout the world
(Hasler, 1993; Campbell and Oliver, 1996; Charlton, 1998). It has
also provided a firm foundation for the development of a fully
formed 'materialist' account of the social creation of disability in
the modern world (Oliver, 1990) as well as a workable analytical
framework with which to understand and explain the particular
 5

type of institutional discrimination encountered by people labeled

'disabled' because of perceived impairment (Barnes, 1991).

Inevitably, these developments have had an increasingly important

influence on social policy at both the national and international
levels. For example, many countries including Britain now have
some form of anti-discrimination legislation to protect people with
accredited impairments from unequal treatment (Doyle, 1995;
Oliver and Barnes, 1998). Moreover, the World Health
Organization’s (WHO) revised definition of disablement,
commonly known as ICIDH2, has attempted to incorporate several
key elements of the social model analysis of disability (Finkelstein,
1998; WHO, 1999)

However, despite this success, or perhaps because of it, the social

model is not without its detractors. Misinterpretation by some
disability activists has led to claims that the social model precludes
discussions of impairment, the importance of 'medical' treatments,
and ignores questions of gender, minority ethnic status, sexuality,
class and so on. Furthermore, recent developments within the
'academy' have given rise to a rejection of 'grand theorizing'
reminiscent of that, which permeated the social sciences during the
1960s. Hence, the tendency for 'post' theorizing, whether it be
termed 'postmodernist', 'post-structuralist' or 'post-fordist' and calls
the renewed emphasis on personal narratives and experience (see
for example, Hughes and Paterson, 1997; Wendell, 1997; Corker
 6

and French, 1999; Shakespeare, 1997), and the analysis of the role
of impairment in the process of disablement (Shakespeare, 1999).

Here the social world is somehow reconstructed or rectified to

accommodate a potentially endless variety of competing and ever-
changing discourses, which tend to ignore or play down the very
materiality of disabled people's lives. The end result is the clouding
of the meaning of 'disability' as defined by the disabled people's
movement and, most importantly, its impact on disabled people's
lives; whether it be economic, political or social (Oliver and
Barnes, 1998; Finkelstein, 1999).

Such approaches also tend to sidestep the contention those bodily

differences, whether physical, sensory or intellectual, are
materially shaped by the complex interaction between biological
and social forces and processes. They overlook the contention that
perceptions of impairment are culturally created in the same way
as perceptions of gender, race, sexuality and so on, and that these
perceptions vary with reference to time and place; a point made
forcefully by a disabled writer, Paul Abberley, more than a decade
ago (Abberley, 1987) and later developed by, amongst others, the
Australian geographer Brendan Gleeson (1999). Equally
importantly, they also fail to address the substantive body of work
on the experience of 'chronic illness' produced be medical
sociologists (Barnes and Mercer, 1996).
 7

From a social model or materialist perspective then, perceptions of

impairment and disability are inextricably linked to the 'mode of
production' or the social organization of work. Consequently, there
are several important points to be made about a social model
analysis of work. One, it does not automatically mean that
individually based interventions, whether they be medically,
re/habilitative, educational or employment based, are of no value
or always counter-productive. Two, it signifies a concerted attempt
to shift attention away from the real or imagined functional
limitations of individuals with perceived impairments and onto the
difficulties caused by disabling environments both physical and
social. Three, it rejects the notion that unemployment and
underemployment among disabled workers can be understood in
isolation from other factors such as education, transport, the built
environment, access, ideology and culture. Finally, it recognizes
that within the present context, policy developments in the
employment field can have only a limited impact on the
employment problems of disabled people and that, as a
consequence, meaningful change is only likely through a radical
reformulation of the meaning of and the organization of work.

Work, disability and policy?

There is universal agreement that disabled people are

disproportionately disadvantaged in the current labour market.
Various estimates from both official and unofficial sources suggest
that people with accredited impairments are substantially more
 8

likely to be unemployed and/or underemployed than

contemporaries without perceived impairments, and that these
disadvantages are not simply due to the functional limitations of
individuals (Lonsdale 1986; Barnes, 1991; Hyde, 1995; 2000;
Barnes, H. et al., 1998). Within the UK and, indeed, much of
western society since at least the eighteenth century, the meaning
of work has been organized around a particular set of values and
principles; namely, the pursuit and maximization of profit, waged
labour, and competition between individual workers. All of which
effectively disadvantage or disable people with any form of
perceived functional limitation/impairment, whether physical,
sensory or intellectual, and the more overt the
limitation/impairment the more severe the disadvantage or
disability.

However, there is growing evidence that it has not always been

like this (Albrecht, 1992; Davis, 1996; Gleeson, 1999), and that
when work is organized around a different set of principles such as
social necessity, obligation and interdependence, for example,
people with accredited impairments can be included in rather than
excluded from the workplace. It is notable to recall here that during
the 1939/45 conflict nearly half a million hitherto 'disabled'
workers were drafted into the labour force at various levels in aid
of the war effort (Lonsdale, 1986; Humphries and Gordon 1992),
and that immediately following the cessation of hostilities
considerable Government effort was put into maintaining this
situation due to the 'social obligation' (Thornton and Lunt, 1995)
 9

felt towards these workers and to those who were injured as a

consequence of war. Subsequently, of course, Government
priorities changed and so did their labour market policies. Clearly
then, as with perceptions of disability, the meaning and
organization of work is a social creation, and like all social
creations it is subject to change.

Moreover, many commentators are increasingly suggesting that the

meaning and organization of work is currently undergoing major
changes; changes which are as fundamental as those which
occurred with the coming of the industrial revolution. The
intensifying globalization of the world economy along with
unprecedented technological development during the post 1945
period has meant that many western societies, including Britain,
have shifted from what Wolf Wolfensberger (1989) termed 'a
primary production' to a 'post primary production' economy. In
other words, agricultural and manufacturing industries have given
way to human services as the principal source of economic activity
and employment. Indeed, for Manuel Castells (1996) this shift is as
significant as industrialization. He terms this 'revolution'
informationalisation, to reflect the new forms of production and
power that have emerged in the last decades of the twentieth
century.

Furthermore, it is often argued that this new 'mode of production'

offers new employment possibilities for those who, hitherto, may
have been excluded and labeled disabled (Cornes, 1991; Friedman,
 10

1993; Barnes, H. et al., 1998). But it is important to remember here

that, historically, access to technology has never been spread
evenly throughout the population - disabled or otherwise, and that
although information may have taken on a value rivaling that of
the material products of industrialization, questions of ownership
and control remain as relevant today as they ever were (Castells,
1996; Sapey, 2000). Alan Roulstone (1998) has distinguished
between the different sectors of employment through his separation
of 'computer workers' and 'technology users' in order to
differentiate new from old forms of work and their implications for
disabled people; in short, information technology is both enabling
and disabling.

All of which serves to underline the fact that whilst new

technology, deregulation and more flexible production techniques
may prove enabling to some, to others they will almost certainly
mean worsening social isolation, and new and enhanced forms of
exclusion. Indeed, whereas in the nineteenth, and most of the
twentieth, century an 'able body' was an essential prerequisite for
inclusion in the workforce and a 'non-disabled status', so in the
brave new world of the twenty first century an 'able mind may be
far more important' (Barnes, et al., 1999; 225). In such
circumstances the consequences for people viewed and labeled
either 'with learning difficulties' or 'mentally ill', groups who are
already disproportionately disadvantaged within the disabled
community, are decidedly bleak.
 11

It is essential, therefore, to remember that if people with accredited

impairments are to access some of the 'benefits' of these post-
industrial developments, then it is crucial that governments take a
more committed and interventionist stance on the operation of the
labour market.

Certainly, it is the case that over recent years politicians and policy
makers have adopted the language of inclusion, and posited what
at first glance may seem like social model solutions to the
problems associated with disability in the workplace. The rhetoric
surrounding the introduction of the 1995 Disability Discrimination
Act (DDA), the setting up of the 'Disability Task Force', the
development of the 'New Deal' programme, and the recent
proposed benefit changes provide a wealth of examples (see for
example MacAskill, 1999).

But for politicians and policy maker’s rhetoric rarely accords with
reality (Barnes and Oliver, 1996). Hence policies relating to the
employment and underemployment of disabled people remain
focused almost exclusively on the supply rather than the demand
side of labour. As a consequence, strategies which target and
highlight the functional limitations of individuals with perceived
impairments are prioritized and supported at the expense of those
which draw attention to and, therefore, implicitly if not explicitly,
seek to resolve the stark inequalities of the social organization of
work. In many ways the rhetoric has changed but, on the whole,
the policies have not.
 12

The recently introduced 'New Deal for Disabled People', for

example, is targeted at people in receipt of disability benefits such
as 'Incapacity Benefit' and 'Severe Disablement Allowance'. The
programme includes a 'Personal Adviser Service' to help disabled
people and 'those with a long term illness to overcome barriers to
work'; various 'Innovative Schemes' to explore how to help
disabled workers move into or stay in work; an 'Information
Campaign' to improve knowledge of current employment services
and to change attitudes of 'benefit recipients, employers and the
public and a programme of research and evaluation' (New Deal,
1999; 1). There is a wealth of evidence to show that similar
policies have existed in a variety of guises throughout the post
1945 period and that they represent nothing less than 'fifty years of
failure' (Hyde, 1995).

Moreover, the coming of the 1995 Disability Discrimination Act

(DDA) has done little to resolve the situation. The Act is based on
the orthodox view of disability: impairment is the cause of
disablement rather than the way society is organized. Hence, the
idea that disabled peoples' legitimate requests for adjustments and
change are considered somehow unrealistic and unnecessary is
retained. The law provides only limited protection from direct
discrimination in employment, the provision of goods and services,
and in the selling or letting of land.
 13

Protection is limited because, as in all employment discrimination

legislation, the onus is put firmly on the individual to prove that
discrimination has taken place. But unlike other disadvantaged
groups such as women and people from minority ethnic groups, for
example, before they can begin the process of litigation the
disabled worker must first demonstrate to an Employment Tribunal
that they are in fact 'disabled' under the terms of the Act. Failure to
do so means that a case cannot be brought. To date, most of the
cases are withdrawn or settled before a full tribunal hearing,
seventy four per cent, while a further ten per cent are dismissed
(Meagre, et al., 1999). The overwhelming majority of employers,
over 90 per cent, are not even covered by the Act and those that are
can easily claim exemption if they can demonstrate that
compliance would damage their business (Gooding, 1996). It is
noteworthy too that evidence from the USA suggests that since the
introduction of anti-discrimination legislation: the 1990 Americans
with Disabilities Act, unemployment among disabled Americans
has actually increased rather than decreased (Charlton, 1998).

Furthermore, until recently there was no enforcement mechanism

with which to monitor and police the Act. This was in stark
contrast to the situation in America and other UK anti-
discrimination legislation such as the 1975 Sex Discrimination Act
(SDA) with its Equal Opportunities Commission (EOC) and the
1976 Race Relations Act (RRA) and the Commission for Racial
Equality (CRE). But the effectiveness of these bodies has been
very limited. Indeed, sexism, heterosexism and racism are as
 14

evident today as they were in the 1970s. A key factor in explaining

the relative failure of the SDA and the RRA is the semi-
autonomous status of the EOC and the CRE. Although
'independent', funding and appointments are controlled by
politicians and policy makers. Consequently successive
unsympathetic governments have been able to coerce both
organizations into concentrating the bulk of their activities on
'education and research' rather than enforcement (Gregory, 1987).

After intense lobbying from a variety of sources Tony Blair's

Government established the Disability Rights Commission (DRC).
It began operations in April 2000 and will 'work towards the
elimination of discrimination against disabled people'. Chaired by
Bert Massie, previously the Chairperson of the Government
sponsored Royal Association of Disability and Rehabilitation
(RADAR), the UK's largest disability organization controlled and
run by non-disabled people the DRC has fifteen commissioners
including representatives of employers organizations. The DRC
has the power to take up cases on behalf of individuals and
organizations. But early indications suggest that, like the EOC and
the RRA, its main functions will include the production of new
codes of practice, the updating of existing ones, the provision of
information and advice for 'employers, businesses, service
providers and disabled people', conciliation, and to 'conduct
research' (Wilkinson, 1999; 12).
 15

Given the nature and extent of the discrimination encountered by

disabled people there is little here to suggest that the DRC will be
any more successful than its contemporaries for gender and race.

To work or not to work?

There is little doubt; therefore, that without a further reformulation

of the meaning and organization of work large sections of the
population labeled 'disabled' will almost certainly remain
disproportionately disadvantaged in the British labour market.
Indeed, to some extent the foundations for these changes have
already been established.

Moreover, the present Government's avowed commitment to

getting more people with accredited impairments into employment
through 'welfare to work' type schemes and the development of
more flexible and less demeaning 'benefit' systems is, in broad
terms, commensurate with the on going demands of the disabled
people's movement. But in many ways these policies are not really
new and their impact will be significantly tempered by the fact
that, as yet, politicians have been reluctant to tackle the very real
environmental and social barriers disabled people encounter within
the world of work.

Unfortunately, inaccessible built environments, transport, and

communication systems remain major obstacles for disabled
people wishing to enter the world of work. Equally important, if
 16

people with perceived impairments are to be encouraged into paid

employment then work must be made more socially and financially
rewarding. All too often the type of jobs offered to disabled people
are low status, low waged occupations with poor working
conditions and few opportunities for advancement. The new 'tax
credit' scheme for disabled workers and the introduction of the
minimum wage may be seen as a partial recognition of this
problem. If developed further these and similar solutions would go
some way in addressing the 'distribution dilemma' that has plagued
western social policy throughout history (Stone, 1984).

It should be remembered at this point that government intervention

in the way the labour market operates is not new; nor is it confined
to policies for disabled people. Since at least the industrial
revolution successive governments have played a major role in
structuring and restructuring the labour market through grants and
tax concessions for industrialists and employers in order to
generate and sustain economic growth and maintain political
stability. With regard to the employment of so called disabled
people, as noted earlier, various 'demand side' initiatives were
implemented during and immediately following the 1939/45 war to
include this section of the workforce in the world of work.
Examples include the Employment Quota Scheme, reserved
occupations and sheltered workshops. There is general agreement
too that such policies are effective when supported by committed
and responsible Governments (Thornton et al., 1997; Roulstone,
1998; Hyde, 2000).
 17

If the present Government is serious about getting disabled people

into work then similar policies might be reintroduced and
strengthened. Additionally, they could set targets for all
Government departments and state organizations to achieve in
respect of employing disadvantaged workers, including
organizations such as the health service, local authorities,
universities and so on. Further, in its dealings with the private
sector it could use similar targets to enforce contract compliance.
Finally, it could switch the grants it gives to the voluntary sector to
organizations controlled and run by disabled people whose record
in employing people with perceived impairments puts the
traditional voluntary sector to shame (Oliver and Barnes, 1998).
Indeed, the British Council of Disabled People's National Centre
for Independent Living and the overwhelming majority of the
growing network of Centres for Independent/Integrated Living
employ only disabled workers (Barnes et al., 2000).

With careful implementation such a strategy would not detract

from the effectiveness of the organizations involved or, indeed, the
overall performance of the economy. There is substantial evidence
that given a supportive environment many workers with perceived
impairments are just as economically productive as 'able
bodied/minded' peers (Kettle, 1979; Prescott-Clarke, 1990;
Roulstone, 1998; Simons, 1998). Additionally, removing large
numbers of people from the state benefit system would reduce
public spending; something which both policy makers and the
overwhelming majority of the disabled workforce appear to want.
 18

It is important to point out here that this is not to suggest that

everyone with an accredited impairment can or should be expected
to work at the same pace as 'non disabled' contemporaries or that
all disabled people can or should work in the conventional sense.
To expect people with 'severe' or multiple and complex
impairments to be as 'productive' as non-disabled peers is one of
the most oppressive aspects of modern society.

Indeed, as noted above, work is a social creation; what is

considered work at one point in time may not be perceived as such
in another. Moreover, to radically reconceptualise the meaning of
work beyond the rigid confines of waged labour is not
unprecedented in the modern context. For instance, in their attempt
to assert the role of women in a predominantly patriarchal society,
the women's movement has successfully redefined the meaning of
work to include housework and childcare. Furthermore, growing
evidence suggests that because of the difficulties encountered
when trying to balance the requirements of parenthood with those
of the workplace, a situation which is especially problematic for
those at the foot of the class system, many women are now
beginning to seriously question the organization of the modern
labour market. As long ago as 1983 Angela Philips pointed out:

'It was having a baby which.... brought home to me with real

force the hopelessly unbalanced nature of a society which is
 19

organized solely for the people without a responsibility for

children' (cited in Philips, 2000; 2).

She calls for far more flexibility in the workplace and the
introduction of policies designed to address the very real financial
and practical needs of both women and men who, at present, are
often seriously economically and socially disadvantaged if they
choose to become parents (Philips, 2000).

Similar arguments are commensurate with a social model analysis

of the oppression of disabled people within late capitalist society.
After all such an approach constitutes more than simply a reaction
to existing inequalities, it warrants a systematic and considered
attempt to challenge and overturn the ideologies and cultural
values upon which those inequalities are based.

Since the emergence of the disabled people's movement, the idea

of 'independent' living, and disability arts and culture, the concept
of a 'disabled identity' has taken on a whole new meaning, which in
many ways serves to undermine traditional assumptions about
disability and work. The idea of 'independent' living is not about
independence in the conventional sense; it is really about
'interdependence'. Of course, historically, independence has been
linked to perceptions of 'normality', and 'dependence' with
'abnormality', accredited impairment and 'disability'. As a
consequence, modern society is increasingly geared to the
presumed needs of a mythical 'able bodied/minded' majority and
 20

those unable to conform are penalized accordingly, both

economically and socially. All of which ignores the fact that all
human beings are, if only by necessity, interdependent. There is
no qualitative difference between disabled and non-disabled people
with respect to basic human needs. People with accredited
impairments have the same needs as everyone else in terms of
health care, education, housing and so on. Moreover, in the UK, as
in much of the contemporary world, wealthy people depend on
others to perform many of the basic tasks of everyday living and, it
is generally the case, that the more wealthy they become the
greater their dependence on others. Yet they are perceived as
'independent' only because they have the resources with which to
exercise control. The struggle for 'independent' living, therefore, is
about equal access to health care, educational, housing etc., and
also about the struggle for resources and control.

One element of this struggle was the recent and successful

campaign for the introduction of 'direct' and 'indirect' payment
schemes to enable disabled individuals to employ 'personal
assistants' to do the every day tasks they are unable to do
themselves. The coming of such schemes, with the setting up in
1987 of the Independent Living Fund (ILF) and, more recently, the
passing of the 1996 Community Care (Direct Payments) Act, has
meant that many people with perceived 'severe' impairments,
although 'unemployed' themselves, are now engaged in the
employment of others. Many personal assistance users employ as
many as five or six people over the course of a week. Besides
 21

generating employment for others, running such schemes involves

effort, skill and responsibility. Surely in any other context such
activity would be regarded as work?

Moreover, the recent unprecedented expansion of user led

involvement in the development and delivery of these and other
services has also meant that more and more disabled people now
spend their 'free' time actively involved in service provision of one
form or another. Furthermore, the coming of the disability arts
movement has precipitated the generation of a whole range of
cultural activities involving both disabled and non-disabled
individuals which, taken together, constitute meaningful
alternatives to the various 'non disabled' cultures which continue to
permeate late capitalist society. A positive disabled identity and
lifestyle need not and must not be determined by an individual's
ability to participate in a labour market constructed around
conventional 'able bodied/minded' ideals.

Discussion and implications

All of this may be located within the growing awareness amongst

academics and policy makers that the continued development and,
therefore, future stability, of a 'western style' economy such as that
of Britain is inextricably linked to the complex and ever changing
relations between production and consumption (Giddens, 1997;
Castells, 1996; Baumann, 1988). This should be coupled with the
recognition that, regardless of their role within the 'conventional'
 22

labour market, people with accredited impairments and labeled

'disabled' are both producers and consumers of a vast array of
services upon which many so called 'able bodied' people depend;
they are, therefore, an essential component within the context of
this equation.

Equally important is the realization that many of the issues raised

here are not peculiar to the 'disabled' population. Since at least the
1970s both unemployment and underemployment have been
common experiences for many other sectors of society. Lone
parents, people from minority ethnic communities and workers
under twenty-five and over fifty are especially vulnerable. There is
ample evidence that, in common with many western type
economies, the British labour market is failing to distribute income
and wealth to significant minorities other than those labeled
'disabled' (Meadows, 1996).

It is also the case that without radical social change, the

intensifying pace of technological development will almost
certainly exacerbate the situation further. The problem of how to
accept life without paid employment and prepare for 'significant
living without work' can no longer be confined to what the
Warnock Committee termed 'handicapped people' (Warnock
Report, 1978; 33). Furthermore, as the boundaries between what is
and what is not considered a socially acceptable condition become
evermore blurred, as they most surely will if only because of the
changing demography of the UK and recent developments in
 23

genetic medicine, changes which are evident throughout much of

the 'western' world, the significance of this realization will become
evermore important.

Taken together then these developments make the on going

struggle for the widespread rejection of the current inequitable
organization and distribution of paid employment, and the call
for the meaningful re-evaluation of what is and what is not to be
considered work all the more urgent.

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