by Elly Macha

The UN Declaration of the Rights of Disabled Persons (1975) proclaims that all persons with impairments are entitled to all human rights

whether some disabled people remain alive or perish is determined by the wishes of the non-disabled members of the community

To put it very simply, it is not the inability to walk which disables someone but the steps into the building

Furthermore, the problem is exacerbated by the fact that as many as 80 per cent of all disabled people live in isolated rural areas in the developing countries where medical and other related services are very scarce and where impairments cannot be detected early enough. To a great extent, people with impairments everywhere are confronted with physical, cultural and social barriers, which constrain their lives and limit their opportunities.

The UN Declaration of the Rights of Disabled Persons (1975) proclaims that all persons with impairments are entitled to all human rights including: the right to self-reliance and to "medical, psychological and functional treatment", the right to social security, to having special needs taken into account in social and economic planning, to protection from all forms of exploitation, and the right to be informed of their rights. The consequences of discrimination against, and inadequate provision for disabled people are serious. Disabled people are often subjected to social, cultural and economic barriers which impede their access to health care, education, vocational training and employment.

As we enter the third millennium, concern about the social and political dimensions of disability has intensified considerably. The exclusion of disabled people from the mainstream of economic and social life has been a subject of mounting political protest and mobilisation. Across the world, disabled people are struggling for access to education, employment, housing and transport, for the right to express their sexuality and have children, to participate in political and social life and in the development of their communities. However, the world is a disabling and discriminating place, and millions of us experience this every day of our lives. Although from varying cultural backgrounds and different perspectives, disabled people world-wide have suffered long-term discrimination in many ways, as the brief historical perspective below portrays. The history of disabled people has been a miserable one. In many societies disabled people were treated as useless creatures cursed by the gods. Many were killed, abandoned to die or condemned to permanent exclusion in asylums. In the Greek society disabled babies were abandoned on desolate hillsides and left to die. Nobody valued their lives. In China disabled children and adults were thrown into rivers.

Europe is said to have greatly tortured disabled people in the past. It is claimed that "New Commodes" targeted arrows at mobility-impaired people. In some instances the extermination of disabled people was carefully arranged and enforced by legislation. Spartans killed disabled people as a matter of law. The church also participated in this destructive mission. Martin Luther for example, ordered the killing of disabled children in the belief that they were incarnations of the devil. English Eugenicists eliminated disabled people under the influence of Darwinian evolution theories about the survival of the fittest. Germany’s Nazi euthanasia programme under Hitler exterminated disabled people. They were judged to be making no contribution to the development of society but rather as a burden on society. Girls with intellectual impairment were sterilised without their consent; it is estimated that 400,000 people were sterilised against their will during Nazi era.

There are people today who, like the nineteenth-century Eugenicists, are strongly in favour of non-treatment of new-borns with severe impairments. This is to say that whether some disabled people remain alive or perish is determined by the wishes of the non-disabled members of the community. In Africa some parents/guardians of disabled people were afraid of being laughed at and isolated by the society. Hence they often kept them indoors and made no efforts to develop them for their future lives. In some traditions it was believed that such people were a curse from the gods upon society and deliberate action was taken to terminate their lives. Some tribes in Tanzania, for example, killed Albino infants. Where sinful or socially undesirable acts such as witchcraft were suspected, a disabled person and his/her whole family was permanently stigmatised. So superstition and witchcraft practices dominated the interpretation of impairment and the affected individuals were given all kinds of bad names and images.

However, the definitions and experiences of disability vary from society to society. In some African societies, disabled people were perceived as innocent and even holy. Consequently they were overprotected. They were not exposed to challenges that could develop their potentials. Though they were safe from persecution, such overprotection meant they were unable to exercise their freedom and control of their lives.

An analysis of history of disabled people world-wide reveals periods of "invisibility", when they were exterminated, and "visibility", when they were left to survive in the community. By and large, disabled people live in a state of social suspension: neither "sick" nor "well", neither "dead" nor "alive", neither out of society nor wholly in it... As undefined, entities, they exist in partial isolation from society.

The crucial issue to understand here is not that societal responses vary, but why this should be so. Social responses to disability have been determined by two important but interrelated factors, that is, the mode of production and the central value system. The former includes the type of economy, the need for and the type of labour, the amount of surplus it generates and the way it is distributed. The latter relates to social structure, whether hierarchical or egali- tarian, how achievement is defined, perceptions of age and sex, relations with neighbouring societies, aesthetic values and many more functionally related factors. The interplay of the two is what produces different responses to disabled people at different times in any given society. Clearly then, social responses to impairment cannot be explained simply with reference to single factors such as the economy or culture.

Disabled people are confronted by various social injustices in different societies. Are such social injustices here to stay? The answer is: Definitely not! The struggle to end mistreatment has begun. I am referring to the enthusiastic efforts of disabled people and their allies to overcome the difficulties despite imposed cultural and social impediments. The important point to begin with was to identify the ‘enemy’ and, after much suffering, disabled people and their allies realised that the enemy was stigma.

Stigma is the situation in which society assigns certain negative attributes to individuals or groups. It involves evaluating, making judgements about and reacting to other people. Stigmas mirror culture and society and they are in constant flux. They reflect a view of life, a set of personal and social constructs, a set of social relations and social relationships, a form of social reality. Stigmas emerge through processes of social interaction.

Two contesting theories govern how people with impairment are perceived and defined. The first is a traditional theory of disability, perpetuated by the individual or medical model of disability that for centuries tended to dehumanise disabled people and has been the main source for the social injustices discussed earlier. The second is what I call a revolutionary theory which is discussed alongside the social model of disability. The protagonists of this theory are activists in the disability field.

Individual/medical model of disability
This has been the dominant model in service delivery. It perpetuates a lot of myths about impairments and disabled people: that disabled people are sick, helpless, useless, unfortunate and incapable of controlling their lives. Within this model, disabled people are reduced to the medical condition that accounts for their physical and/or intellectual characteristics, and little or no account is taken of the social and economic context in which people experience such medical conditions. The model sees disability as an individual tragedy that requires personal adjustment, medical solutions and rehabilitation by professionals. It sees disabled people’s problems as being a direct consequence of their impairment. Disabled people are defined as a group of people whose bodies do not work, who look different or act differently, who cannot do productive work. The key elements of this analysis are performing and conforming; both raise the question of normality, because this approach assumes a certain standard from which disabled people deviate.

Who is "normal" and "not normal"? Normality and abnormality is defined by professionals and experts who wish to safeguard the status quo of their expertise. The authority and control they exercise over the lives of disabled people inevitably has a profound impact on the latter.

This approach is used by most agencies that deliver services for disabled people, such as education, health, rehabilitation, and by employers. It involves certain assumptions about impairment, disability and handicap. The interpretation of these three concepts creates myths about disabled people, leading to their exclusion and segregation into an institutionalised life-style.

Based on the medical model of disability, the World Health Organisation (WHO), in 1980, offered the following definitions:

IMPAIRMENT ... is any loss or abnormality of psychological, physiological, anatomical structure or function...
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...
HANDICAP ... is a disadvantage for a given individual, resulting from an impairment or a disability that limits or prevents the fulfilment of a role that is normal (depending on age, sex, social and cultural factors) for that individual.

One of the basic elements of the relationship between oppressor and oppressed is that the consciousness of the oppressed person comes to conform with the oppressor’s consciousness. Thus the liberation of the oppressed requires self consciousness in order to be able to discard the perceptions of the oppressor and become autonomous and responsible. Any true emancipation of disabled people has to start developing from within. Oppressed individuals must take the initial role of transforming social stigmas into positive perceptions and actions. And it was in response to oppression that disabled people and their allies emerged to challenge the position of the medical model of disability by asserting what I call a revolutionary model, the social model of disability.

Social model of disability
The social model of disability challenges the stigma attached to disabled people by the way the non-disabled community perceives and defines them. It emerged as a way to view disability in a wider context. Within this model, disability is the disadvantage or restriction of activity caused by social organisation which takes no or little account of people who have impairments and thus excludes them from participation in the mainstream of social activities. Disability refers to social disadvantage created by society’s failure to acknowledge and account for the differential needs of people with impairments. The model does not reject the notion of impairment, but situates it squarely within societal perceptions and settings. The term "impairment" is applied to an individual’s physical, sensory, intellectual or behavioural condition. The term "handicap" has "oppressive implications ... mainly because of its historical allusion to cap-in-hand begging and charity". In accordance with the social model, all disabled people share a common experience of oppression regardless of their race, sex, ethnicity, age and status. According to this notion, "disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society".

This social model of disability has had a profound influence on our understanding of how society perceives ideas, interprets them, generates knowledge, analyses issues and the way conclusions and solutions are sought. It has opened our eyes to the fact that society imposes restrictions that impede our access to many services. For example, whilst the individual/medical model of disability blames a person for failure to use existing structures such as buildings, literature, communication/information networks, transport etc, the social model criticises the designers, manufacturers and contractors of these structures who at the time of designing, constructing or manufacturing, did not consider disabled people’s access. To put it very simply, it is not the inability to walk which disables someone but the steps into the building. Similarly, it is not the inability to speak that creates disability, but the society which fails to communicate with such a person. This way of seeing things opens up opportunities for the eradication of prejudice and discrimination against disabled people. The way to reduce disability is to adjust the social and physical environment to ensure that the needs and rights of people with impairments are met, rather than attempting to change disabled people to fit the existing environment.

Conclusion
Disabled people and their allies in many parts of the world have developed the social model as an alternative to the medically oriented way of thinking about disability. The social model message is simple. It says that if you want to make a difference to the lives of disabled people, you must change your so-ciety and the way it treats people with impairments. This change must begin with full recognition of disabled people’s human and civil rights, with the involvement of disabled people themselves in planning and policy-making processes relating to their lives, and with commitment to removing disabling barriers that prevent disabled people’s participation in their society. Hence, the slogans "Rights and not charity!" and "Nothing about us without us!"

We have a long way to go before the social model of disability becomes the basis on which policies are made, services are provided and lives are lived. It is also important to make clear that we are not saying that there is no place for medical or other professionals. What the social model of disability means is that existing professions, services and ideologies need to be transformed in ways that promote disabled people’s self empowerment and real social change. Professionals should ally themselves with disabled people and their communities in working to attain these goals.

Elly Macha from Tanzania is undertaking her Ph.D. on Disability Studies, in the Department of Sociology and Social Policy, at the University of Leeds.