The History Of "Otherness"

“People may “other” me due to my disability, this is their weakness, not mine” The Thoughtful Beast, adapted by Melissa Ryan.

Bodily difference has for centuries determined social structures by defining certain bodies as the norm, and defining those which fall outside the norm as 'Other'; with the degree of 'Otherness' being defined by the degree of variation from the norm. In doing this, we have created an artificial 'paradigm of humanity' into which some of us fit neatly, and others fit very badly. Life outside the paradigm of humanity is likely to be characterized by isolation and abuse.

The story we have recorded of the lives of people with disability is a story of life lived on the margins. For people with disability, their history is largely a history of silence. The lives of people with disability have not only been constructed as 'Other', but frequently as 'the Other' of 'the Other'. People with disability are marginalized even by those who are themselves marginalized.

While it is difficult to know where our constructions end and the reality begins (for the constructions shape the reality), it is clear that other stories and constructions which might have created different realities have been selectively 'forgotten'. Models of inclusion - for example, among the Maori in Aotearoa where it is suggested that disability is accepted as being normal - have been erased from Western disability history. Disability activists are now facing the task of re-creating a culture which celebrates and embraces difference. In the West, however, the script we have written for people with disability is a narrow one.

The history of disability in the West has been characterized by the progressive development of several models of disability: the religious model of disability, the medical/genetic model of disability, and the rights-based model of disability. These models, or constructions of disability, have set the parameters for our response to people with disability. Through time, these models have become more sophisticated, yet their essence remains constant – otherness.

In a Western Judea-Christian society, the roots of understanding bodily difference have been grounded in Biblical references, the consequent responses and impacts of the Christian church, and the effect of the enlightenment project underpinning the modern era. These embodied states were seen as the result of evil spirits, the devil, witchcraft or God's displeasure. Alternatively, such people were also signified as reflecting the "suffering Christ", and were often perceived to be of angelic or beyond-human status to be a blessing for others.

Therefore, themes which embrace notions of sin or sanctity, impurity and wholeness, undesirability and weakness, care and compassion, healing and burden have formed the dominant bases of Western conceptualisations of, and responses to, groups of people who, in a contemporary context, are described as disabled. In the past, various labels have been used for such people. These include crippled, lame, blind, dumb, deaf, mad, feeble, idiot, imbecile, and moron.

As medical and scientific knowledge expanded profusely, the doctor and the scientist replaced the priest as custodian of societal values and curing processes. Work and production became commodified, and time became linear. Human worth was then to be determined by perceived work value and profitability; and lifestyles and lives became dictated by the mechanistic practices and institutions of the nation state. Universality replaced particularity, reason replaced mystery, and knowledge and state of the mind superseded the lived experience of the body. 'Normality', then, became determined by the ideal of the white, youthful, able, male body; and otherness to this ideal became hierarchically placed as inferiority. Therefore, difference became redefined as deviance commanding control.

Events of this era were to have a major impact on the lives of those with bodily limitations. The lives of such people were reduced to little more than a medical label, and their futures defined by a medical prognosis. People with disability then became a class requiring physical removal from the "able-bodied" norms of what was developing as an urbanised society. As some commentators note, this was the era when cripples disappeared and disability was created.

With the modern era, there was an increasing emphasis on scientism and social Darwinism; and this resulted in the roles of special institutions shifting from agents of reform to agents of custody for social control and institutional segregation for those now described as sub-normal. Institutions became the instruments for the facilitation of social death. Through a presumed scientific status, care for people with disability became depoliticised, technicalised and professionalised, predicated on notions of tragedy, burden and helpless dependency.

In the post-industrial and post-enlightenment era, disability, in Western society, has been regarded as an individual affliction predominantly cast within scientific and medical discourses. Therefore, "disability" has come to be defined and signified as a power-neutral, objectively observable attribute or characteristic of an "afflicted" person. According to this model, it is the individual, and not society, who has the problem, and different interventions aim to provide the person with the appropriate skills to rehabilitate or deal with it. However, in a culture, supported by modern Western medicine, and which idealises the idea that the body can be objectified and controlled, those who cannot control their bodies are seen as failures.

In recent years, and with the influence of normalisation principles since the 1970's, the locus of an individualised conceptualisation has shifted from the state-run (public) institution to community-based facilities and care. However, the medical perspective of disability remains wedded to the economy, whereby personal capacity and ability are often assessed as incapacity and inability so as to determine a person's eligibility for financial assistance and benefits, and access to personal resources. An economic view narrows the complexity of disability to limitations and restrictions, with implications of whether "flawed" people can be educated or productive.

In more recent times, however, the notion of 'disability' has come to be conceptualised as a socio-political construct within a rights-based discourse. The emphasis has shifted from dependence to independence, as people with disability have sought a political voice, and become politically active against social forces of disablism. Disability activists, in engaging in identity politics, have adopted the strategies used by other social movements commanding human and civil rights, against such phenomena as sexism and racism. And these strategies have brought gains, but within certain limitations.

From the mid 1980's, some Western countries like Australia have enacted legislation which embraces a rights-based discourse rather than a custodial discourse; and which seeks to address issues of social justice and discrimination. The legislation also embraces the conceptual shift from disability being seen as an individualised 'medical problem' to rather being about community membership and participation, and access to regular societal activities such as employment, education, recreation and so on. Where access is inappropriate, inadequate, difficult or ignored, advocacy processes have been initiated to address situations and promote the people's rights.

While rights-based discourse, at a strategic level, has brought some additional entitlements to people with disability, it has not significantly altered the way in which disability is constructed and so, despite legislative changes, some people's lives have not necessarily changed. In fact, new challenges such as genetic technology and reproductive technology threaten to further alienate the whole and integrated person (the body, mind and spirit) from the medically, or scientifically, diagnosed 'person' (the condition). We are now seeing the emergence of a genetic model of disability, a revamped medical model, which 'promises' to actually expand the population of people with disability to include people whose impairment is their 'bad' genes and their disability is the social response of avoidance, discrimination and even elimination which their impaired genes elicit in others