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GUEST EDITORIAL

A CRITIQUE OF THE DISABILITY MOVEMENT



Introduction

Despite the fact that disability has been in existence since time immemorial, it generated sufficient academic interest only during the last forty years. Academics in western countries, many of whom have had personal experience of disability, have contributed significantly to the manner in which the issue of disability has been conceptualised and how it is understood from a historical perspective. This process is beginning to have an appreciable impact on the formulation and implementation of social policies regarding disability.

The post-war era has also witnessed the global development of the disability movement, at the international, national and local levels. The movement is comprised of groups of individuals with disabilities who have collectively come together to form their own democratic organisations, charged with the mandate of securing the rights of disabled people.

Both of these groups, who are closely linked with each other, have put forward an alternative understanding about the manner in which disability has been hitherto understood, challenging the presuppositions and assumptions upon which past understandings and explanations of disability have rested. The crux of the matter is the issue of power, that is, who has the legitimate right to determine how disabled people live their lives, and who has the legitimate right and voice in determining the priorities for the provision of disability services, given the inevitable scarcity of human and financial resources.

This paper examines the principal tenets of the disability movement, analysing the contribution that it has made to the greater understanding of disability, and discusses areas where the author, who has cerebral palsy, considers the movement and its thesis to be deficient.

The Meaning of Disability

A prerequisite for understanding the principal tenets of the disability movement is a clear definition of what is actually meant by the term 'disability'. The literature draws a crucial distinction between 'impairment', 'handicap' and 'disability'; terms that are often confused with each other. The most commonly cited definition is that of the World Health Organisation in 1976 (1), which draws a three-fold distinction between impairment, disability and handicap, defined as follows. 'An impairment is any loss or abnormality of psychological, physiological or anatomical structure or function; a disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being; a handicap is a disadvantage for a given individual, resulting from an impairment or a disability, that prevents the fulfilment of a role that is considered normal (depending on age, sex and social and cultural factors) for that individual'.

According to activists in the disability movement, the World Health Organisation has confused between the terms 'disability' and 'impairment'. They maintain that impairment refers to physical or cognitive limitations that an individual may have, such as the inability to walk or speak. In contrast, disability refers to socially imposed restrictions, that is, the system of social constraints that are imposed on those with impairments by the discriminatory practices of society. Thus, the Union of the Physically Impaired Against Segregation defined impairment and disability in the following manner. An 'impairment [is] lacking part of or all of a limb, or having a defective limb, organism or mechanism of the body'. 'Disability [is] the disadvantage or restriction of activity caused by contemporary organisation which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities' (2).

The Disability Movement's Thesis

The central tenet of the disability movement's thesis is that at its core, disability is a human rights issue, and that historically, particularly during the capitalist era, through the discrimination and oppression that they continually experience, disabled people have been systematically excluded from society. As such, they have been denied the rights, responsibilities and opportunities that are intrinsic in participating as full and active citizens in the society to which they belong. It is thus postulated that disabled people live in a 'disabling world'. It is the manner in which society is structured, and the negative societal attitudes that inhibit and militate against disabled people from exercising their full rights of citizenship. All disabled people experience disability as a social restriction whether these restrictions occur as a consequence of inaccessible built environments, questionable notions of intelligence and social competence, the inability of the general public to use sign language, the lack of reading material in Braille or hostile attitudes to people with non-visible disabilities.

Sociologists and social commentators in the disability movement, the majority of whom are disabled themselves, quote two different schools of thought, namely, the medical model and the social model. Each model makes its own ontological (what is the nature of disability), epistemological (the causes of disability), and experiential (what does it feel like to be disabled) assumptions. These are of critical importance, since the manner in which disability is perceived will have major implications for the assumptions upon which disability policy is evaluated. If it is assumed that disability is essentially concerned with the amelioration of physical or intellectual abnormality, with the ultimate goal of enabling a disabled person to become as 'normal' as possible, then priorities and allocation of resources will be decided by the medical and paramedical professions. If however, disability is primarily perceived to be a human rights issue, with the ultimate goal of ensuring that disabled people are intrinsically included within society as full and active citizens, then priorities for disability policy will be determined by disabled people and their democratically elected organisations.

The Medical Model

The medical model which is still considered to be the dominant paradigm for service provision and is historically the predecessor of the social model, makes the following assumptions. Firstly, disability is defined primarily as a disease state and purely in medical terms. Disability is essentially a 'problem', focusing on the individual. It is perceived as a deviation from the norm. Therefore, the role of the medical and paramedical professions is to cure, correct or ameliorate this problem, so that the disabled person can become as 'normal' as possible. Secondly, the medical model assumes that disabled people are biologically and psychologically inferior to those who are able-bodied. Therefore, they are considered to be 'not fully human', and by implication, do not have the competence to make decisions for themselves. According to Brisenden, 'We are seen as 'abnormal' because we are different, we are problem people, lacking the equipment for social integration. But the truth is, like everybody else, we have a range of things we can and cannot do, a range of abilities, both mental and physical that are unique to us as individuals. The only difference between us and other people is that we are viewed through spectacles that only focus on our inabilities, and which suffer an automatic blindness - a sort of medicalised social reflex - regarding our abilities' (3). Thirdly, disability is seen as a personal tragedy, which occurs in individuals on a random basis; it is a misfortune. However, the disability movement maintains that disability is a social and cultural construct. Impairments do not just happen by chance, but are the results of structural factors within society. In many societies, disability is a direct result of poverty. Furthermore, social and economic development, and advances in medical technology will change the portfolio of impairments that occur. Fourthly, the medical model assumes that there is an objective state of 'normality' which gives professionals, especially within the medical profession, a dominant role. There is little scope for disabled people and their families to participate in decision-making. Ryan and Thomas, writing in the context of people with learning difficulties state that 'Medical model thinking tends to support the status quo. The subnormality of the individual rather than the subnormality of the environment, tends to be blamed for any inadequacies ... Within most institutions, staff have a vested interest in not questioning the quality of the patients' environment too radically, for they themselves are part of the environment' (4).

The medical model has been criticised and found to be deficient on a number of counts. Given that disability is perceived to be, at root an individualised problem, undue power has been given to able-bodied professionals to make decisions on behalf of disabled people. The model imposes a presupposition of inferiority, both physical and intellectual, upon disabled people.

The Social Model

The social model, in contrast, is the antithesis to the medical model. The focus here is placed upon the community and society rather than the individual. It is social barriers, such as inaccessible buildings, unusable transport systems as well as pejorative social attitudes, prejudice and institutionalised discrimination that are the real concerns of disability. The social model assumes that within the concept of disability there is a continuous relationship between physically impaired individuals and their social environments. Disability is the direct result of society's failure to provide adequate and appropriate services. Hence, the needs of disabled people are not adequately accounted for within the social organisation of society. Disability is perceived in attitudinal terms as a socio-cultural rather than as a biological construct. According to the Physically Impaired Against Segregation, 'It is our view that it is society that disables physically disabled people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group' (2). Protagonists of the social model assert that disabled people live in a 'disabling world'. It is the prevailing social norms and attitudes held by society at large which mitigate against disabled people being treated as full citizens. Hahn states that disability stems from 'the failure of a structured social environment to adjust to the needs and aspirations of citizens with disabilities rather than from the inability of the disabled individual to adapt to the demands of society' (5).

In contrast with the medical model, the social model maintains that disablement has nothing to do with the body, as it is exclusively the consequence of social oppression. Furthermore, disability is seen as a human rights issue, in which progress is made through disabled people collaborating together to achieve common mutual objectives. Pagel thus states that 'Disabled people have started to come together to challenge the 'right' of... charities and professional people to control their living conditions; in order to do this, disabled people have had to fight against the power which these groups have held over them' (6). Under the medical model, independence is not seen in terms of whether disabled persons can perform activities of daily living for themselves. In contrast, the social model perceives independence in terms of the ability of disabled people to make choices of how their physical, social, emotional and spiritual needs are to be met. It is concerned with disabled people having control over the manner in which they live.

The differences between the social and medical models of disability are summarised in the following table (7).

Table 1 : Models of Disability

The Medical Model
The Social Model
personal tragedy theory
personal problem
individual treatment
medicalisation
professional dominance
expertise
adjustment
individual identity
prejudice
behaviour
care
control
policy
adjustment
social oppression theory
social problem
social action
self-help
individual & collective
responsibility
experience
affirmation
collective identity
discrimination
attitudes
rights
choice
politics
social changes



Oliver's Historical Explanation of Disability

Michael Oliver, Professor of Disability Studies at the University of Greenwich, UK, has postulated a materialist account and explanation of disability. Disability is not a fixed absolute category, but has been defined and perceived differently throughout history. In order to understand the position in which disabled people find themselves today, it is necessary to understand this historical process. Oliver believes that, given that disability is a socio-political construction, disabled people's social position can be best analysed within the explanatory framework that links disability both with the dominant mode of production and the dominant ideological hegemony. The historical watershed within this explanatory framework was the industrial revolution and the onset of capitalism. Prior to the industrial revolution, Britain was essentially an agrarian society where little distinction was drawn between where one lived and worked. Under such conditions, disabled people were fully integrated within their local communities. However, the rise of capitalism and the industrial revolution during the 19th century separated the workplace from the home environment, resulting in the creation of an industrial proletariat and also the erosion of existing communities. Such a process resulted in a distinction being drawn between those who could work, and those who could not, many of the latter being disabled people. The former were remunerated for their work through the unfettered operation of the wage-labour market. Those unable to work were, for the purposes of the allocation of resources, further sub-divided between the deserving and undeserving poor, with the criterion of this allocation being the basis of need. However, this distinction, which in practice was very difficult to make, required yet another distinction to be drawn by the medical profession, that is, between those who were fit to work and those who were not. Furthermore, the rigors of the factory system combined with the separation of home and work, resulted in disabled people finding it harder to participate in the workplace. Such a cacophony of events has had a profound impact upon the lives of disabled people. The development of capitalism and the factory system not only created a sharp distinction between home and work, but also resulted in the ideological promotion of individualism. 'The requirements of the capitalist economy were for individuals to sell their labour in a free market and this necessitated a break from collectivist notions of work as a product of the family and group involvement. It demanded nothing less than the ideological construction of the individual. ... [Prior to the industrial revolution] individuals always existed but only as part of social groupings, whether they be families, clans or communities. It was only with the rise of capitalism that the isolated, private individual appeared on the historical stage' (8).

The onset of capitalism and the dominance of individualism have resulted in two further detrimental experiences that have pejoratively affected the lives of disabled people, namely, the categorisation and the medicalisation of the issue of disability. Capitalism, which places great value upon individuals being able to make a productive contribution to the market economy, requires that those unable to so participate should be easily identifiable, so that for such a group, the distribution of goods and services is calibrated on the basis of need, rather than the unfettered operation of market forces. Hence, 'with the rise of capitalism, disability has become an important boundary category through which people are allocated to either the work-based or needs-based system of distribution' (8). Furthermore, disabled people could not meet the demands of the wage labour system, and thereby became controlled through the process of exclusion. Commenting upon such a categorising process, Oliver further states that 'It is possible to argue, ... that the formal rationality underpinning the disability category makes it the ascription of privilege, in that it offers legitimate social status to those unable to work. But the substantive rationality, enshrined in the experience of disability, is much more concerned with the processes of stigmatisation and oppression' (8).

In the nineteenth century, the role of ascribing the category of disability to an individual was assigned to the medical profession. This was the genesis of a trend towards the increasing medicalisation of society generally, which has continued unabated to the present day. With reference to disabled people, the twentieth century has witnessed the increasing intervention of the medical profession in their lives. The disability movement does not question the undisputed fact that the increase in medical science has indeed resulted in appreciable advances in the lives of disabled people, such as the increased survival rates of babies with very low birth weights and the eradication of some conditions resulting in disability. However, what is a matter of heated dispute and controversy is that the medical profession has been ascribed the mandate of arbitrating on aspects of disabled people's lives that are of an administrative, and not of a medical nature. The eligibility to receive certain financial benefits from the state, and the eligibility to hold a driving licence are two examples of such instances.

A Critique of the Disability Movement

It is beyond doubt that the genesis and subsequent development of the disability movement, both within the United Kingdom and throughout the world, has created a quantum shift in the manner in which disability has been perceived, and what is now considered to be the appropriate and legitimate manner in which future disability policy is to be developed and implemented. In the past, and to some extent today, it has certainly been the case that disabled people have experienced ostracism, discrimination and oppression, which has resulted in them being classified as second
class citizens in the contemporary societies in which they live. The disability movement has been successful in raising the profile of disability on the political agenda, by poignantly highlighting the social, economic and political structures, as well as the pejorative attitudes that have contributed to ascribing disabled people the status of second class citizenship. Notwithstanding the significant contribution that the disability movement has made during the past thirty years, there are nevertheless a number of issues, both with regard to the thesis and with the disability movement itself, with which the author would take issue.

The thesis presented by the disability movement has provided a penetrating analysis as to the oppression and discrimination that disabled people have been subjected to in the past, as well as providing a lucid account of the subjective experiences of what it is like to be a disabled person within contemporary society. However, the literature emanating from the disability movement is somewhat parsimonious in delineating and envisioning the future structure and social mores of a future society which would indeed be free from oppressive structures and negative social attitudes held by society at large, thereby enabling disabled people to attain the legitimate status of full citizenship.

Altering the physical environment is an obvious place to start, but there is far more that is required. The disability movement has campaigned for anti-discrimination legislation, analogous with that passed with reference to race and gender within the United Kingdom, to be enacted by all countries throughout the world, that would prohibit blatant manifestations of discrimination in the areas of employment, education, housing and so forth. Such legislation has already been enacted in the United States, Zimbabwe and India. However, anti-discrimination legislation is necessary, but in no manner sufficient in achieving a non-disablist society. Even within those countries where anti-discrimination legislation has been enacted, there has been much discussion regarding the efficacy of such measures. Assuming the premise that disability is essentially concerned with attitudes, such legislation is a blunt instrument, since it is impossible to legislate to change the manner in which individuals think and behave.

A further question arises concerning the appropriateness and applicability of the western-based notion of empowerment, which presupposes that rights are exercised and that decisions are made in accordance with the preferences and wishes of the individual, to developing countries. Such an individualised notion of empowerment as espoused by the international disability movement runs contrary to accepted social customs and practices that are found in many developing countries. In societies such as India, it is customary that all major decisions, for example who one should marry, the purchase of property and career decisions, are taken not by the individual, but made collectively through consultation with the extended family and kinship networks. This is particularly the case in rural areas, and operates irrespective of whether disability is present within the family. Thus, a focus on rights and decision-making practices rooted in the ideology of individualism is in many societies, particularly those within the African and South Asian context, often at variance with cultural and social norms. It is surely right to question the efficacy of proselytising western-based individualism, which runs contrary to the collective and communal or familial patterns of decision-making as has been practised in many developing countries for centuries.

Another matter for discussion is the most appropriate strategy for achieving the disability movement's agenda. As the previous section has shown, one of the principal tenets of the movement's thesis is that disabled people experience discrimination and social oppression, resulting in their living in a 'disabling world'. Upon the supposition that disabled people are indeed an oppressed group, the movement has advocated that conflict should be used in combating such oppression and discrimination. While appreciating the foundation of such sentiments, and without denying the validity in the assertion that disabled people do indeed face discrimination and oppression, it is contended here that disability is a far more complex phenomenon than can be solely and adequately explained by social oppression and discrimination. It is the experience of the author that vast numbers of people, rather than actively oppressing disabled people, are in fact fearful and ignorant of disability, which leads them to relate to disabled people in inappropriate and often demeaning ways. Oppression is often of an unwitting nature. If oppression and discrimination were the sole factors in the creation of a disablist society, then conflict might be the most appropriate strategy to adopt. However, if as is contended here, fear and ignorance also provide a significant explanation to societal attitudes towards disability, then a more appropriate and pertinent strategy for the creation of a non-disablist society might be through the medium of education. It is an indisputable fact that disabled people are in the minority within society, albeit a significant minority, comprising approximately ten percent of the world's population. Disabled people, in order to create a society which is indeed non-disablist and which secures effective, full citizenship, need to foster and build alliances with their able-bodied peers, which is best achieved through consensus building and education.

A related point concerns the controversial issue of the role that should be played by able-bodied professionals in the realm of disability. The disability movement itself is divided on this issue. Those aligned with the radical wing of the movement would maintain that unless one has had personal experience of disability, there is no mandate to speak on disability issues whatsoever. The genesis of such sentiments stem from the past experiences of disabled people being excluded from the decision-making process, both at the policy level and within their own lives, where the medical model held the dominant hegemony. Others within the disability movement adopt a more conciliatory stance, maintaining that the role of an able-bodied professional is that of a facilitator, enabling disabled people to make effective choices for themselves in determining the kind of lifestyle they wish to lead. To coin the phrase of a well known disability activist, David Werner, the role of the able-bodied professional is to be 'on tap but not on top'.
In the past, it has to be admitted that mutual suspicion and antipathy had characterised this crucial relationship. On the one hand, professionals feel threatened by the growth in the power and influence of the disability movement. The raison d'etre of professionalism is that specialised and accredited knowledge is acquired though a rigorous course of training which is then applied. The disability movement challenges such presuppositions, maintaining that it is disabled people themselves who are the legitimate and rightful arbiters in deciding what is best for their lives. On the other hand, disabled people have been, quite rightly, wary about the undue influence and power that professionals have hitherto wielded, debarring disabled people from having any effective mandate in setting the disability policy agenda. Those working within the medical professions and for the traditional charity sector, such as organisations for disabled people, have been subject to particular attack.

In the future, the strength of the influence of the disability movement is inevitably going to increase, a trend that should be endorsed and encouraged. However, the disability movement should be prudent and wise in the future development of the relationship it fosters with able bodied professionals. Considerable care should be exercised to ensure that 'the baby is not thrown out with the bathwater', so that those who were hitherto oppressed do not become the oppressors of contemporary society. This is of particular relevance to staff working within community care setting, where there are a multiplicity of ethical issues surrounding the client-carer relationship.

Raymond Lang
School of Development Studies, University of East Anglia, Norwich NR4 7TJ, UK.
Email : r.lang@uea.ac.uk


REFERENCES

1. World Health Organisation. Document A29/INF DOCI/1, Geneva, Switzerland, 1976.
2. Union of the Physically Impaired Against Segregation. Fundamental Principles of Disability, London, 1976.
3. Brisenden, S. Independent Living and the Medical Model Disability, Handicap and Society, 1986, 1(2) : .
4. Ryan J, Thomas F. The Politics of Mental Handicap, Free Association Books, London, 1987.
5. Hahn H. Public Support for Rehabilitation in Programs: The Analysis
of US Disability Policy. Disability, Handicap and Society, 1986, 1( 2) : 121-13 8.
6. Pagel M. On our Behalf. Manchester Coalition of Disabled People. Manchester, 1988.
7. Oliver M. Understanding Disability. From Theory to Practice. London, MacMillan, 1996.
8. Oliver M. The Politics of Disablement, London, MacMillan, 1990.


ASIA PACIFIC DISABILITY REHABILITATION JOURNAL (VOL.9, NO.1, 1998)

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