|This paper is the response to essay one for Disability: Culture, Community and Change (SCS286), where we have been asked to examine sociological theories of the 20th Century to the early 21st Century and how these have led to contemporary perspectives influencing language specifically related to disability, and how this can influence the experience and identity of the person living with a disability. I come from an Occupational Therapy paradigm that is underpinned by a framework that believes that meaningful occupation is an innate human need, and without opportunity to engage in lifespan occupations due to structural barriers (i.e. access to workplaces, community centres, educational institutions through universal design principles; participation in political legislation policies), results in poor health and well- being outcomes for the individual and community. By using sociological theories and critical reflection techniques to consciousness raise, as well as to understand disability from a disabled individual’s perspective, I believe that this essay will be the foundation to building insight that will support a fundamental skill to contribute to genuine and dependable client centred approaches both now and into the future.
Health is a result of people’s everyday experience. Therefore health and illness is socially stratified and unequal. People Living with a Disability (PWD) have historically and continue to experience marginalisation driven through theoretical perspectives supported by dominant discourse. The discourse involving ‘disability’ and ‘impairment’ are interconnected with links to deviation concepts from biological norms, and social constructions with profound outcomes that are entrenched in embodied experiences, social exclusion and health outcomes. While the catalyst for moral change has begun (e.g. The Peoples Movement of Disability), past assumptions and unchallenged assessments continue to present barriers to PWD in expressing an innate and legitimate right to control one’s own destiny. This essay is divided into two sections: Part one will analyse the terms ‘impairment’ and ‘disability’ using critical theory to examine the experience of living with a disability and the barriers to emancipation; while Part two will deconstruct and reconstruct the authors perspective on ‘disability’ as well as highlight some human rights concepts and the immoral disparities faced for PWD and other minority groups, combined with a look towards the future.
Part 1 Dominant Discourse and Models
Language is a foundational structure that provides a mechanism to understand, construct and classify the things in our world. However, language can also be manipulated to facilitate hegemonic ideologies. Becker (1963) asserts that Labelling Theory exposes the coercive ways in which dominant cultures socially control those seen as deviant from standard cultural norms (as cited in Germov, 2009) In Western culture ‘handicap’, impairment’ and ‘disability’ are used frequently as labels that define deficiency of states and traits (Oliver &Barnes, 1998), while also inciting negative collective reactions such as exclusion and discrimination (Baum, 2008; Germov, 2009). Further, these traits are commonly generalised with little to no consideration of an individual’s unique experience, and carry pervasive and objectified meanings such as: weak, abnormal, dependent and stupid (Sprague & Hayes, 2000). Further, oppressive labels such as these infer moral and psychological judgements (Baum, 2008). The repercussions of such labels continue across the lifespan with unmerited and excessive consequences.
The ‘disability’ typology is founded on an assumption of hegemonic normality and is illustrated in the dichotomous language used within the Eurocentric Biomedical Model (right and wrong anatomical, physiological and psychological function or structure), (Oliver & Barnes, 1998). The model asserts that disability is found within the individual and is the result of a biological malfunction and something that can be treated and/or cured (Rohrer, 2005), while discounting the existence of socially originated causes of illness (e.g. inequitable distribution of paid work opportunities and association with poverty and poor health).
Further socially constructed phenomena like ‘sick roles’ dictate how a PWD is meant to act and be treated (Parsons as cited in Germov, 2009; Rohrer, 2005). Whereby, the internalisation of dominant discourse such as stereotyping results in ‘false consciousness’, ‘otherness’ (Holmes, Hughes & Julian, 2007), and reduced ‘agency’ that results in negative responses to ‘self- determination’ and ‘empowerment’ (Sprague & Hayes, 2000). Further these outcomes contribute to the social determinants of poor health like: social isolation, poverty (Zola, 1993) and material disadvantage (Baum, 2008); alienation from services (e.g. health, and social support) deprivation of employment opportunities, and disruption to education and training (Christiansen & Townsend, 2004; Duncan, 2002; Molineux, 2004; Radomski & Trombly Latham, 2008). The World Health Organisation States that the condition in which people grow, live, work and age have a powerful influence on health. “Inequalities in these conditions lead to inequalities in health….” (WHO, 2007).
The discrimination that PWD have experienced through the ages has agitated dominant discourse asserting that cultural and structural society disables the person (e.g. a student’s diagnosed and subsequently labelled with a severe disability, but may actually be literate. However, he/she does not have access to the appropriate reading material within the school system) as asserted in The Social Model of Disability (Ritzer, 2008). This model emphasises the extent to which the structural environment (i.e. social) moulds and manipulates the degree to which someone is mentally or physically disabled and is underpinned through a human rights framework (Habibis, 2009). This framework is regarded as universal and egalitarian, and by virtue of being human argues for all people having equal rights and freedoms regardless of status (Amnesty International, 2011).
The Feminist perspective asserts that the experience of disability is not just about prejudice economic status and equality, but also about areas that are linked to such things as sexuality, reproduction and motherhood (Rohrer, 2005). This is particularly clear in dominant society’s discrimination, but rather more in the flat out denial of the ability or capacity of a PWD fulfilling wife and/or mother roles. Further, judgements about what is normal body structure and prejudices regarding what is not, also results in personally damaging assumptions about expectations that involve intimate relationships (i.e. sexual desire, capacity for intimacy and/or intercourse), (Lloyd, 2001). Further, the acknowledgement of a PWD as existing as a sexual being in contrast to stereotypical dominant models of femininity devalue and ignore women with disabilities desires and rights to be whole, equal, and visible within society (Lloyd, 2001; Morris, 1993).
‘To destroy something in life all one must do is encircle it with barriers’.
I feel that the current issues surrounding humanity like that of: justice, freedom, love, reaching ones fullest potential, access, death, war, loyalty, participation, equality and rights can be absolutely crushing with all of its complexity simply because of the sheer magnitude of it all. This results in being mostly and deeply overwhelmed, and of course at times, I imagine, comes across as being apathetic. What could I possibly do to create a better world, how can I consciousness raise?
The Feminist refrain of ‘the personal is political’ did not at first resonate with me. Now, I see that we are all connected, (drawing on Marxist theory) that the struggle is no longer the individual’s but rather a group struggle (e.g. that the women’s experience of difficulties is not a fault of her own, but rather of systematic oppression). That the ‘structure’ the recurring patterns of interaction within political and social institutions (e.g. classism and health status) are creating barriers to ‘agency’, and the ability for the PWD and/or group to control their destinies (e.g. biological determinism and gender equality). The paradox for me seems to be that, what the individual and/or group wants/needs/desires is in contradiction to the system, but of course without the people the system would not exist… overwhelming. Perhaps the answer is to be found in these two refrains: One, to act in the face of overwhelm; Two, to love people and value difference.
By interpreting my world without opening myself up to new experiences of difference, than by definition I have encircled my knowledge with barriers of ignorance, and have begun to destroy all that gives me my humanity… my life. To step out of my experience and into someone else’s I have connected not only to their life, but deepened my own connection within mine resulting in a compassionate, empathetic and connected world. To hold a vision of a world without barriers that insists on equality, participation and rights not just for all women, but for PWD, refuges, sexual minorities, populations of people living in civil war and or are in the aftermath (e.g. Sub Saharan Countries), religious minorities and racial groups is the difference to agitating for change. This agitation can improve the quality of life for everyone by changing the inevitability of health outcomes by combining idealism and pragmatism to drive the concept that human rights are the right to be human… And it all starts with me.
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