WHO QUALIFIES AS `DISABLED'?
Definitions of Disability in the Social and Regulatory Policies of the European Union and its Member States
Introduction
The material in this chapter draws on research funded by the European Commission (EC) and carried out between 2000 and 2002 (EC, 2000). The development of the project was the result of teamwork, conducted in workshops attended by national researchers from fifteen (later fourteen) member states and Norway. The findings were based on reports written by the researchers and were discussed in the workshops. This interactive teamwork was an important feature of the research method and we are grateful to the work of the members of the network, whose names are appended. Illustrative data presented here comes directly from the project's final report to the Commission (Mabbett, forthcoming) but the more general discussion also develops themes from our earlier work (Bolderson, 1997; Bolderson and Mabbett, 1991).
The main subject matter of the project concerned policy definitions of disability in Europe, with special reference to social security, employment and anti-discrimination measures, and in the event this was extended to provisions for independent living. Our brief was to treat this subject comparatively and to discuss the implications of different definitions. The brief referred to `legal' definitions, and, judging by the response of `the world at large' when we embarked on the study, could have been interpreted as a limited and bureaucratic exercise. However, neither we, the researchers, nor the Commission, our funders, viewed it in this way. We were aware of a raft of complex issues in disability policy to which the question of definition was central. They included immediate, practical, problems to which the Commission was seeking answers, but they also related to fundamental issues raised by debates about the meaning of disability and the eligibility criteria used in disability policies.
These concerns are outlined in Part I, which summarises the definitional issues for the European Commission and wider problems of the use of `categories' in social policies and, in particular, the categorisation of people as `disabled' for policy purposes. Part II turns to service definitions and medical assessments in disability policies. Part III discusses different approaches in the member states to assessing whether a person is eligible for income maintenance benefits, and raises questions about the relevance of the various approaches to contingent definitions of disability implied by the service provisions. The Conclusion suggests that `contingent' service definitions, with minimum or no medical input, may be appropriate for measures that allocate and distribute welfare budgets, and that, arguably, they may eventually be subsumed in non-categorical `mainstream' arrangements, but that `essentialist' definitions of impairment may be more suitable for regulatory policies that seek to provide rights, redress, or compensation both at EU and member state levels.
PART I
1. Definitional Issues for the European Commission
The Commission's interest in disability issues has come from a number of directions. The EU has developed a rights based social policy that favours regulation rather than budgetary distributions. Measures to promote equal treatment and freedom from discrimination have flowed from this, and, in the case of disability, have taken the form of the Framework Equal Treatment Directive (FETD) of November 2000 (CEU, 2000) which lays down "a general framework for combating discrimination on the grounds of religion or belief, disability, age or sexual orientation as regards employment and occupation, with a view to putting into effect in the Member States the principle of equal treatment" (Article 1). A key issue here is that no definition of disability has been written into the Directive. The Commission is still looking for ideas on this, and has concerns about how the Directive will mesh with existing provisions in the member states.
The Commission has also sought to strengthen its competence in other areas of its activities. These involve the creation of a common European space of research, analysis and debate. Components include the development of European statistics that enable comparative evaluations of member states' policies and the exchange of information about policy initiatives. Both these aspects require comparable data about target groups and their composition. A comparative study of how social security, employment and care provisions define disability for purposes of establishing eligibility should therefore make an important contribution.
The structure and location of the Commission, its proximity to lobbies and its receptivity to ideas (Mazey and Richardson, 1993; Peters, 1994) have also enabled it to respond to, and take on board, aspects of the social model formulation of disability. In the social model, disability is not an attribute of an individual: disability does not arise as a consequence of a person's impairment but is caused by prevailing social barriers and structures that favour inequality and exclusion (UPIAS, 1976; Finkelstein 1980,1991; Oliver, 1983; Oliver and Barnes, 1990; Abberley, 1993; Barnes, Mercer and Shakespeare, 1999). A step towards reducing exclusion has been taken in the Commission's advocacy of `mainstreaming' policies, especially in the area of employment services. The need for information about the extent to which member states have embraced and implemented mainstreaming, and related emerging issues, has provided further background to the Commission's research agenda.
These concerns and developments do not imply that the Commission can, or wishes to, impose a `standard' definition of disability across the member states. However, the tender document, inviting bids for the research, asked for suggestions of a `framework' within which future developments could be discussed. (It was also hoped that a framework might help in refining the European co-ordinating regulations, which govern arrangements for European migrants' access to benefits, but this particular problem takes us into issues of European citizenship, which are discussed elsewhere (Mabbett and Bolderson, 2002) and not covered in this paper).
2. Categorisation in Social Policy
In a nutshell, the concerns outlined above are about the difficulties of establishing cross-national comparability of populations within target groups; the perceived need for cross-national equivalence of eligibility criteria; the feasibility of `mainstream' provisions that treat everyone on the basis that they are the `same' instead of `different'; and whether benefits and services, rather than structural social reforms, are appropriate or sufficient responses. They resonate with a central distributional issue in social policy which requires decisions to be made about who is `in' or `out' of benefit/service provision. In this section we discuss the problems of categorising people as eligible/ineligible for social policies and reflect on the viability of alternatives to categorisation.
Categorisation, that is, the process of classifying members of a group eligible for a benefit/service, is a distinguishing feature of social policy. In determining eligibility, social policy allocates, distributes and delivers benefits and services to households/individuals who belong to a category, i.e. they are aged, disabled, poor, sole parents, children, workers etc. Social policy differs in this aspect from public services, which are usually indivisible. An example of an indivisible service is defence, which is normally difficult to confine to selected individuals or groups.
In social policy, however, categorisation appears to be a necessary mechanism for the distribution of benefits or services, despite its inherently discriminatory function for good or ill. Categorisation may be helpful, when eligibility criteria are clear and appropriately discerning. On the other hand it may be irksome, when the criteria are confused, distinguish between people on unacceptable grounds, or lead to the dissimilar treatment of people with similar needs.
Alternative approaches to categorisation include giving more emphasis to `indivisible' measures, for example, ramps or lifts for wheelchairs, prams or luggage trolleys. We have elsewhere discussed these issues (Bolderson and Mabbett, 2001) and concluded that whilst `non-rival goods' (where an additional person using a provision such as a ramp does not raise the cost) can be provided non-categorically, since no further, immediate, distributional issue is raised, this is not the case for benefits and services where claimant groups and individuals have to compete for a budgetary allocations.
It may be that certain benefits and services can be treated as though they were indivisible. Examples might be a basic income or free public transport. They are non-categorical but retain a distributive function through other areas of policy such as taxation or regional planning which can serve to target resources on those whose needs are greatest.
One way to avoid categorisation is to `mainstream' benefits and services. Policies that include disabled people with others in their target group, such as people without jobs using employment services, are described as `mainstream'. The benefits and services are potentially `rival goods' (marginal costs can be incurred at times of rising demand) but access to these services does not require a person to be defined as `disabled' and may make for greater inclusiveness.
The idea of mainstreaming is central to aspects of EU disability policy and in Section 1 we touched on its provenance. For now, we should note that it shares a problem with the provision of indivisible public services, or services treated as such, in that it may be insufficient (i.e. not all needs can be met in this way). In addition it suffers from ambiguity of meaning. `Mainstreaming' may make for inclusiveness but when the general service to which access is given is residual, as in the case of social assistance, it may just add to the groups that are marginalized.
3. Problems in Categorising Disability: does disability constitute a special case?
We have noted above, that, in social policy, categorisation may be a necessary evil: it is a distributive mechanism but it is also inherently discriminatory. The problems seem especially difficult when it comes to categories that classify who is or is not disabled for the purposes of a benefit. We can show this by comparing policy definitions of disability with definitions of members of other groups e.g. `children'; ` aged'; `unemployed'; `lone parents'.
In the case of child benefit, the definition of a `child' can be objectified, notwithstanding that this is arbitrary (e.g., he/she is under 18). The service provides money to help cover the extra expenditure needed when there are children in the family. The notion of `child' entails a view that an expense is involved, but there is no attempt at a further definition of who counts as a child.
The same ease of identification applies to the `aged' (e.g. he/she is 65+). The services may be pensions, or care provisions. In the case of pensions, a cash benefit provides an income because it is assumed that a person over the stated age will have no, or only marginal, involvement in the labour market, and care may be provided on the basis of need. The notion of age entails views that a person may be unable to continue to work and/or may be frail but no further definition of an aged/elderly person is required.
In both cases we could say that the target group is easy to identify, but that the criterion for membership (age of the person) is only approximately relevant to the needs or situations experienced by members of the group. However, implicit in the provisions made, are views about what is entailed by youth or age.
The case of unemployment is different. There is no `objective' definition of someone who is unemployed, although he or she, like many other people, will be of working age. The services may be unemployment benefit, training provisions, job placement provisions etc. The definition of unemployment lies in the circumstances (a person of working age does not have a job although he/she is capable of, and available for, work). The definition hinges on whether these circumstances appertain.
As in the case of unemployment, definitions of disability lie in the circumstances which the service or benefit seeks to respond to or remedy. The services define disability and the definitions are highly contingent. There is no objective definition, but, as we discuss later, medical evidence is required in nearly all cases, in lieu, or standing in for, an objective definition, to delineate the category boundary.
PART II
4. Contingent Service Definitions
A definition may refer to the precise setting of bounds or it may be "a precise statement of the essential nature of a thing" (Shorter Oxford English Dictionary, 1997). Thus, the `essence' of a ship may be that it is "designed to float on water" but " its having sails rather than an engine or carrying cargo rather than passengers is accidental or contingent" (Quinton, 1978).
Contingent definitions of disability depend on the needs and circumstances that the service is stated to be responding to. Looking at the range of benefits and services that exist in the member states we can say that, broadly, disability, for policy purposes, may be defined as: incapacity to work; experiencing difficulties in living independently, in undertaking domestic tasks, in moving about, in participating in society, in securing jobs. However, these definitions can be differently constructed, as explained below, (where the references to provisions in individual countries are made for purposes of illustration and are not indicative of their prevalence generally in EU member states). The constructions discussed in this section are those that are `formal', that is, contained in legislation or case law although they may be interpreted/re-interpreted by administrators. We turn below, in Section 5, to assessments of disability which may be based both on rules about medical evidence and/or on the exercise of medical discretion.
Payment of pensions or benefits to people found to be unable to work due to ‘incapacity’ or ‘invalidity’ constitutes one of the largest areas of provision for disabled people in the member states, both in terms of numbers of recipients and expenditure. However, if we look at the benefits and services provided more closely, we find that the meaning of incapacity to work differs between benefits and across countries. It may mean that a person is fully unable to perform work (UK), or partially (Germany), in his/her own/previous occupation (Italy)), or in a suitable occupation in the labour market (the Netherlands), or in any work deemed to be available (UK). Thus the fine print of the service definitions indicate whether disability is understood as a circumstance which is widely distant from the norm or close to it and may affect the profile of the target group.