Disability, the organization of work, and the need for change

Colin Barnes
Professor of Disability Studies
Centre for Disability Studies
Department of Sociology and Social Policy
The University of Leeds
Leeds
LS2 9JT
England

(Statement presented to the Organisation for Economic Co-operation and Development Conference ‘Transforming Disability Into Ability’, March 6th 2003.)

There is considerable historical and anthropological evidence that impairment is a human constant and that cultural responses to perceived abnormalities of the body and mind vary across time, culture and place. It is equally evident that throughout recorded history western society has systematically discriminated against or excluded various groups of people on the basis of perceived biological inferiority, and that this exclusion became systematic following the material and ideological changes associated with capitalist development.

The combination of industrialisation, urbanisation, and associate ideologies including: liberal utilitarianism, Social Darwinism, and Eugenics, provided ‘scientific’ legitimacy to ancient myths, fears and prejudices, and the gradual but intensifying commodification of every day life. As a result 'work' became almost exclusively associated with wage labour and paid employment. This precipitated the development of an employment infrastructure geared to the needs of those deemed 'capable' of this type of activity.

Hence, those considered incapable of work, and labelled 'disabled' were, apart from in, and immediately following, times of war, excluded from the workplace. This legacy remains with us today. Discrimination against disabled people is therefore institutionalised in the very fabric of western society; consequently, disabled people encounter a whole range of material, political and cultural barriers to meaningful mainstream employment and social participation.

Moreover, despite the introduction of a range of measures said to address this unfortunate and unacceptable situation, often generated by the social obligation felt towards those who acquired impairment/s during wartime, including in some states such as the USA and Britain, anti-discrimination legislation, barriers remain largely unchecked. As a result, unemployment and underemployment are a constant feature of the overwhelming majority of disabled people’s lives. This has obvious and well-documented negative economic, social and psychological implications for disable people themselves, their families and, indeed, society as a whole.

This is especially important given that the more technically and socially sophisticated a society becomes the more impairment and disability it creates. There are more disabled people today than there ever were in the past, and the numbers are likely to increase substantially over the coming decades due to a variety of factors including medical advances, ageing populations, the spread of terrorism and war.

The barriers remain because, hitherto, legislation has been weak and piecemeal and, without exception, is founded in, one way or another, on an individualistic rather then a holistic approach to the problem of disability. To-date, the overwhelming bulk of the policies introduced to address the problems encountered by disabled workers in the workplace have, centred mainly on the supply side of labour: namely, disabled workers, in the form of training schemes, subsidised wages and so on. All of which, though not always unwarranted, to varying degrees, reinforce rather than undermine the traditional assumption that disabled workers are somehow not equal to non-disabled peers: the very opposite of what is needed.

Moreover, policies based on notions of ‘mutuality’, that aim to focus on both the supply side (disabled workers) and the demand side (the workplace) of labour, invariably gravitate toward the former, because of national Governments’ subjugation by international corporate interests, and their on going support for, and propagation of, ideologies and cultures that prioritise profit over people.

It is evident therefore that if Governments are serious about addressing the employment problems experienced by disabled people then anti-discrimination policies must adopt a more holistic approach, be strengthened and rigorously enforced. Barrier removal in the workplace is only possible by the development and adoption of policies with a clear and unambiguous focus on the demand side of labour - the social organisation of work - and the economic and social infrastructures that support it. This includes: education systems, health and social support services, transport systems, and the built environment, housing, and leisure industries. All of which are geared to the needs of the non-disabled majority and, consequentially, compound the difficulties encountered by disabled people in the labour market.

Where legislation exists enforcement must be properly funded and made highly visible; naming and shaming those who act in discriminatory ways. Where legislation is currently being considered, governments must make the appropriate arrangements to ensure enforcement commissions are properly in place and that individual responsibility is not left to disabled people themselves.

It is worth considering too that unemployment and underemployment are not experiences exclusive to disabled people. These are increasingly common phenomena in most countries across the world. These problems can only be resolved through increased Government intervention in the labour market. Appropriate policies could include a substantive reduction in the hours worked, job share schemes, wage regulation, reduction in retirement age and so on.

But whilst such policies appear to fly in the face of recent trends, it is important to remember that government intervention in the way the labour market operates is a well-established feature of western development. Since at least the industrial revolution successive governments across Europe and North America have played a major role in structuring and restructuring the labour market through grants and tax concessions for industrialists and employers in order to sustain economic growth and maintain political stability.

Moreover, with regard to the employment of people with ascribed impairments, various 'demand side' initiatives were successfully implemented during and immediately following the 1939/45 war in many European states to include this section of the workforce in the world of work. In most cases these were only tentatively enforced and often abandoned as the memory of war diminished and the political climate changed. But if governments are serious about getting disabled people into work then similar policies might be re-introduced.

However, 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. As is increasingly recognised, to expect people with 'severe’ physical or cognitive conditions to be as productive as non-disabled peers is one of the most oppressive aspects of modern society.

But to reiterate, work, as we understand it today, is an outcome of the industrial revolution: a social creation. Thus, what is considered work at one point in time may not be perceived as such in another. Furthermore, to radically re-conceptualise 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 unpaid labour: namely, housework and childcare.

Furthermore, since the emergence of the disabled people's movement, independent living, 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, dependence, and work. In the UK, for example, the coming of direct and indirect payment schemes enabling disabled people to employ personal assistants (PAs.) or helpers has meant that many disabled people, although formally 'unemployed' are now employers themselves. Many PA users employ as many as five or six people over the course of a week.

The recent unprecedented expansion of user led involvement in the development and delivery of 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. 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 further corollary of these developments is the need for a re-evaluation of ‘disability’ related benefits and pensions within the workings of the economy. Escalating benefit costs are due to a variety of factors: demographic, economic, political and cultural; not least of which is on going Government failure to address the structural barriers to disabled people’s meaningful involvement in the conventional workplace. At present, disability related premiums are fundamental to modern societies that are geared almost exclusively to non-disabled lifestyles.

But rather than being viewed as a drain on national economies they should be considered an indicator of collective social responsibility. It should also be remembered that disability related benefits are not passive in the sense that they go straight into the recipients’ pockets, they are circulated throughout the economy in terms of generating goods and services. Furthermore, there is ample evidence that in many western societies increasingly large sections of the workforce are employed in the service sector, and that they are ‘dependent’ on disabled people and other disadvantaged groups for their very livelihood. Rather than stigmatise and penalise those in receipt of disability benefits, politicians and policy makers should be striving to develop a more equitable and less stigmatising disability benefits system.

All of this may be located within the growing realisation amongst scholars 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. This should be coupled with the recognition that, regardless of their role within the 'conventional' labour market, disabled people are both producers and consumers of a vast array of services upon which many non-disabled people depend; they are, therefore, a fundamental component within this equation.

Finally, as the boundaries between what is and what is not considered a socially acceptable condition becomes evermore blurred, as they most surely will if only because of the changing demography of European society and recent developments in genetic medicine, changes that are evident throughout much of the 'western' world, the significance of this realization will become ever more obvious.

Recommended Further Reading

Abberley, P. 1996: Work, Utopia and Impairment, in L. Barton (ed.) Disability and Society: Emerging Issues and Insights, London: Longman.

Barnes, C. 1991: Disabled People in Britain and Discrimination: A Case for Anti-discrimination Legislation, London: Hurst and Co. in Association with the British Council of Organizations of Disabled People.

Barnes, C. 2000: A Working Social Model? Disability, work and disability politics in the 21st century, Critical Social Policy, 20 (4), 441-457.

Barnes, H., Thornton, P. and Maynard Campbell, S. (1998) Disabled People and Employment Bristol, The Policy Press.

Bauman, Z. (1998) Work, Consumerism and the New Poor Buckingham, Open University Press

Beck, U. 2000: The Brave New World of Work, Cambridge: Polity Press.

Burchardt, T. 2000: Enduring Economic Development: Disabled People, Income and Work, York, The Joseph Rowntree Foundation.

Hyde, M. 1998: Sheltered and Supported Employment in the 1990s: the experience of disabled workers in the UK, Disability and Society, 13 (2), 199-216.

Lunt, N. and Thornton, P. 1997: Employment Policies for Disabled People in Eighteen Countries: a review, York: University of York, Social Policy Research Unit.

Oliver, M. 1996: Understanding Disability: From Theory to Practice, London: Macmillan.

Russell, M. 1998: Beyond Ramps: Disability at the End of the Social Contract, Monroe, Maine: Common Courage Press.

Roulstone, A. 1998: Enabling Technology: Disabled People, Work and New Technology, Milton Keynes: Open University Press.

Stone, E. (ed.) 1999: Disability and Development: Learning from action and research in the majority world, Leeds: The Disability Press.

WHO. 2001: Rethinking Care from Disabled People's Perspectives. Geneva: World Health Organization (Also available on: www.leeds.ac.uk/disability-studies/archiveuk/index.)

(Other relevant literature can be downloaded free for the Disability Archive UK on: www.leeds.ac.uk/disability-studies/archiveuk/index.)