Social Contexts of Disability - Essay Example

DISABILITY Contents Sr. # Topic Pg Introduction 2 2. Discussion of Key Issues 3 2 Disability based exclusion 4 2.2. Lack of training of health care professionals 5 2.3. Communication barriers 6 3. Theoretical Perspectives 7 4. Comparison and Contrast 9 5. Recommendations / Suggestions (peer support 11 6. Conclusion 13 References 14 1. Introduction “Many of us will experience disability - temporarily or permanently at some point in our lives. Most who survive to old age will be increasingly disabled in their final years” Robine , J. M., & Michel, J. P., (2004) Disability has been one of the major topics of discussion in academic as well as social contexts for myriad reasons. Various issues related to disability and people with disabilities has captured the attention of scholars and the general public alike, compounded by the media – both print and otherwise, the issue has gained widespread publicity and acknowledgement. Disability studies are hence a culmination of widespread public interest in the matter as well as the universality of the issues related to people suffering from various disabilities. Owing to its attribute of being associated with various spheres – i.e. political, academic and social, the concept of disability enjoys greater significance and widespread interest. However, this very attribute of universality has led to various debates within the fields of health, politics, social science as well as philosophy with regards to its definition and scope. Academicians, scholars, health care providers and policy makers have debated to define the term as well as the manner in which it can be measured. However, regardless of the vastness of its scope, greater consensus have now seemed to emerge, which is evident from the various definitions provided by the WHO (WHO, 2001), ICF (ICF, 2001), and the UN convention on the Rights of Persons with Disabilities (UN Commission of Human Rights, 2006). The international community’s which have defined the term agree on disability being a culmination of complex interactions between medical abnormalities, physical health restrictions, as well as the attitudes of the external environment which restricts their complete and total inclusion within the mainstream society. The term disability has been defined in different ways. Some such definitions are presented below: According to the World Health Organization: “Disability is an umbrella term, covering impairments, activity limitations, and participation restrictions. Impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.” (WHO, 2010). According to the UN Convention “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” (Disabled World, 2010). 2. Discussion of Key Issues In conventional terms, the issue of disability have been invariably defined and viewed as a medical condition. Its definition and scope is often restricted to the physical health of the individual concerned, and their impairment or limited capabilities. Such a constrained and limited scope of the much broader concept of disability often falters in addressing the issue effectively, thus leaving the individuals suffering from disabilities to be marginalized, discriminated against, and suppressed for want of a proper perspective to view their grievances. Disability can be studied through models which are divided into two distinct categories – the medical model and the social model. The medical model treats the concept as restricted to an individual’s physical health problems while the social model includes the much broader version, whereby the external environment i.e. the society at large is considered as accounting for the problems faced by the people with disabilities. Scholars, researchers and theorists have argued that an individual is disabled not merely on account of their physical handicaps, but also on account of the lack of support from the society at large, which further compounds their disability experience, and prevents them from inclusion into the mainstream community (Oliver, 1990; Hahn, 1988). On account of various reasons, the people with disabilities face a multitude of problems which are discussed in the section below. 2.1. Disability based exclusion It has often been observed that people with disabilities (PWD) are subject to discrimination and hence exclusion from various fields in the society including education, employment, and other social spheres. This may be either on account of lack of availability of adequate opportunities, infrastructure or resources or the plain lack of national level policy initiatives on the part of the government to promote the inclusion of such people within all spheres of life. The PWDs are often a subject of external hostilities as opposed to their own individual restrictions on account of their disabilities. Lack of proper transport facilities, uneven or unpaved sidewalks, crowded roads, physical restrictions in accessing public buildings and / or other similar public places as well as other similar temporary or permanent restrictions make their social inclusion into the ‘mainstream’ society all the more difficult. Furthermore such problems further restrict their right to employment, education and participating in social events thus ultimately leading to their social exclusion from the society (Field et al, 2007; Switzer & Vaughn, 2003). According to Gouch et al (2006) “People with disabilities are excluded by the assumption that they are not capable of full social involvement, and by societys disabling failures to provide for their material needs, including the design of their built environment” (Pp. 59). Such social and material exclusion of disabled people reflects the negative attitudes of the society which tends to marginalize the people with various disabilities. It further adds to their problems thus making it all the more difficult for them to survive independently and rely more and more on government assistance and on the society at large. 2.2. Lack of trained health care professionals The lack of availability of trained health care professionals providing specialized treatment and care to people with disabilities is one of the key issues faced by them. Although considerable and significant efforts are made both at the local as well as national levels to afford personalized treatment to PWDs they are often ignored on account of lack of trained health care providers. According to Kemp and Mosqueda (2004) there is an acute lack of health care professionals who are adequately trained to offer specialized support to PWDs and such lack of knowledgeable professionals is a cause of grave concern. They further state that there is also a lack of paediatric care givers who are trained well enough to provide effective health care treatment to PWDs through the age of eighteen but have no knowledge whatsoever regarding providing treatment for ageing adults. Such an availability of well trained and knowledgeable health care professionals is rare in almost all areas of disability. Despite the growing concern about the lack of support services for such people, the status of health care providers remains more or less unchanged. The problem is further compounded by the quality of care provided (Wunderlich & Kohler, 2001). If the vision of social inclusion of people with disabilities is to be transformed into a reality, it is of utmost significance to first seek the availability of properly trained health care professionals and care givers. It is also worth considering, that the lack of availability of trained professionals also tends to marginalize the people with disability and compound their problems thereby further leading to their access in mainstream society. 2.3. Communication Barriers Communication is one of the most essential and basic human right. All individuals are entitled to express their thoughts and feelings, and communicate information freely with others. However such basic human right is not accessible to people with disabilities. Millions of individuals who suffer from disabilities which prevent them from communicating freely with others, because of restricted ability to use their natural mode of communication, i.e. speech. Such people are more likely to be marginalized, victimized, and suffer discrimination and are often forced to settle for compromised services. It is hence of utmost significance that such people be afforded access to specialized services which seek to ensure that their voices are being heard and that they are included in the mainstream society rather than confining them to their secluded worlds. More often than not, the communication barriers are compounded by the societal prejudices as opposed to personal limitations to communicate. People in the mainstream society often hold stereotypical views of PWDs and consider them as inefficient. They are often pitied rather than heard, and controlled and manipulated rather than liberating them through support services. Thus most of the times owing to societal attitudes, their voices are not heard and their grievances are left unattended. The lack of availability of trained health care professionals also plays an important role in further aggravating the issue, further adding to the woes of people with disabilities. It forms a vicious circle where one problem leads to another and the barrier becomes incapable to break. 3. Theoretical Perspectives A radical paradigm shift has been observed in the past couple of decades in terms of attitudes of researchers towards issues related to disability, from the predominant medical model to the gradually evolving social model. One of the most crucial aspects of both these models is the wider consensus among the researchers regarding disability – being a homogenous social construct which is beyond any race, class or gender. Theories offer a broader understanding of the subjects / concepts being studied and provide the audience with a wider perspective to analyze a given situation with regard to the concerned subject. Some such theories are discussed below: Social Comparison Theory The social comparison theory helps in understanding the impact of deinstitutionalization of people with disabilities on the formation of self-concept for people suffering from disabilities (Finlay, Lyons, 2000). This theory posits that PWDs especially those suffering from intellectual or learning disabilities are more likely to compare themselves with their "normal" counterparts in their communities and thus develop the notions of self-concept. Such a comparison often leads to the formation of a negative self-concept among PWDs (Tracey, 2002). According to Edgerton (1993) people suffering from disabilities are individuals who are often stigmatised owing to their own personal limitations as well as the attitudes of the society at large. They are less likely to achieve certain goals and accomplish certain tasks which are socially valuable for instance, living independently, or engaging in gainful employment and hence are tend to attract negative evaluations by their peers. Social identity theory suggests that belonging to a community which is socially devalued can lead to negative implications on the development of the idea of self-concept among such people (Edgerton, 1993; Jahod, Markova & Cattermole, 1988) Such a comparison is likely to cause negative self perceptions among PWDs and hence restrict their access to mainstream communities thereby leading to marginalization of such people. In such a situation it becomes all the more important to offer valuable guidance, and support which is only possible through trained health care professionals and inclusive policy measures at the national level aimed at supporting such people and assisting them in engaging with the mainstream community. Positivist Theories Major researches and studies in the field of health care are largely dominated by positivist theories. The positivist theories are mainly centered on finding cures to the impairments suffered by the people with disabilities in a bid to reduce if not eliminate, the differences between them and the ‘normal’ public and pave way for their social inclusion. The positivist theories acknowledge and recognize the role played by assimilation of PWDs with the mainstream society as well as its positive impact on such people. Thus more emphasis is given on addressing the issues related to social context as opposed to finding a cure for the ailments. Issues such as education, employment and wider community participation form the basis of such theories rather than devising methods to cure the illnesses. It is also argued by researchers and advocates of positivist theory that finding an appropriate cure for ailments is often not always possible and that it may pose profound social and culture problems for those suffering from disabilities. Their lives are hence at risk from such drastic measures and in the hands of the few who lack proper and adequate knowledge about the complex illnesses of the disabled people (Oliver, 1997; Bury, 1996). 4. Comparison and Contrast The key issues discussed above i.e. the social exclusion of the disabled people, the lack of availability of trained health care professionals as well as the communication barriers faced by people with disabilities are vaguely similar to each other in terms of the ultimate outcome i.e. lack of efforts on the part of the able-bodied populace to provide proper support services to people with disabilities. The issues discussed include attributes from both – the social as well as the medical model. The concerns related to lack of properly trained health care professionals is as much a social issue as it is a medical concern. However the ultimate outcome remains unchanged. The key issues discussed are mainly centered on the lack of availability of basic human rights – that of communication, equal opportunities in education, employment as well as provision of health care, and the right to be treated with dignity. However the negative perceptions of such people mainly derived from stereotypical representation in the media, which tend to marginalize such people as being in want of help and support have further added to the problems. It is often portrayed that PWDs are in greater need of medical assistance than their able-bodied counterparts, while in reality they are as much in need of medical assistance as any living being. Concerns regarding security and safety, ageing and physical and emotional support are required by both PWDs as well as the healthy population. The notion that the physical limitations of such individuals restricts their inclusion and participation in communities does not hold true considering the fact that the society is equally responsible for not breaking the barriers that would encourage their full participation. 5. Recommendations / Suggestions One of the key aspects that has remained consistent throughout the discussion is the fact that social inclusion of people with disabilities is a matter of prime concern and one of the most basic civil rights. This can be achieved through removing barriers which prevent or restrict their foray into the mainstream society. Such an action should hence, not be perceived as a goodwill initiative but as a positive step towards assisting PWDs in securing their basic human rights. Although it is generally accepted that all individuals are equally entitled to basic human rights, such a right has in fact not been made accessible to people with disabilities (UN Commission for Human Rights, 2006). Research have shown that people with disabilities are often denied the right to employment, education, social engagement including right to marry and bear children, as well as a range of health care services. It may hence, not be wrong to claim that they have been categorically marginalized thus denying them the basic right to live with dignity. It is widely acknowledged that people with disabilities have an equal right in all aspects, at par with those without such disabilities i.e. the normal public. However at the same time, it has been conveniently ignored that such people are in dire need of additional support and assistance which may help them in accessing such rights in an effective manner. It is the moral obligation of the society at large to assist the people with disabilities in accessing their basic rights and initiate efforts aimed at including them within the broader community. Failure to remove such barriers and assist the people with disabilities to enjoy a healthier and discrimination-free life, incidentally amounts to violation of human rights. Peer support can play a major role in eliminating the negativities that surround PWDs and limit the participation of the general public in assisting such people. It can pave way for eliminating the culture of ‘illness’ and disability and instead create a more positive environment which seeks to promote a healthy culture of ‘good health’ and ability (Curtis, 1999). 6. Conclusion Disability is one of the most neglected social issues which is ignored by both – the policy makers as well as the society at large. People with disabilities are not only lack adequate access to health care facilities but also lack social amenities in terms of infrastructure within the built environment which will make it easier for them to participate in the wider community. Such wilful exclusion further adds to their concerns leading to greater social evils as employment, illiteracy and poverty among such people. Lack of adequate employment opportunities is likely to affect their economic wellbeing which in turn would restrict their access to health care facilities. Furthermore the inefficiencies of the built environment which make it difficult for such people to access public places leads to further inconvenience in engaging themselves with the members of the society hence leading to their social exclusion. Thus poverty, unemployment and marginalization of PWDs lead to further emotional distress and hence causing multiple health problems. There is an urgent need to bring about radical transformation in the manner in which the society functions and their attitudes towards PWDs. The greatest transition can perhaps be achieved through enlightenment of the able-bodied and more equipped populace who can take initiatives to eliminate such differences and aim for greater inclusion of PWDs into the mainstream society. Another equally significant transformation need to be brought in the manner in which such people are perceived. There are often low societal expectations from PWDs. This needs to be elevated in order to bring about strong and positive changes in the society. References: Bury, M., (1996). Defining and research disability: challenges and responses. In: Barnes C, Mercer G, editors. Exploring the divide: illness and disability. Leeds: Disability Press; Pp. 17–38. Curtis, L.C. (1999). Modeling Recovery: Consumers as Service Providers in Behavioral Healthcare. National Council News. Rockville, MD: National Council for Community Behavioral Healthcare. Edgerton , R. B. (1993). The cloak of competence revised and updated. Berkeley: University of California Press. Field, M. J., Jette, A. M., (2007). The Future of Disability in America, The National Academic Press, Pp. 2211 - 2215 Finlay, W. M. L., & Lyons, E. (2000). Social categorizations, social comparisons and stigma: Presentations of self in people with learning difficulties. British Journal of Social Psychology, Vol. 39, Pp. 129-146. Gouch, J., Eisenschitz, A., McCulloch, A., (2006). Spaces of Social Exclusion, Routledge Publication, Pp. 57-60 Hahn, H., (1988). The politics of physical diff erentness: disability and discrimination. Journal of Social Issues, Vol. 44, Pp. 39–47. Jahoda, A., Markova, I., & Cattermole, M. (1988). Stigma and the self-concept of people with a mild mental handicap. Journal of Mental Deficiency Research, Vol. 32, Pp. 103-115 Kemp, B., Mosqueda, L. A., (2004). Aging with a Disability, JHU Press, Pp. 210 - 212 Oliver, M., (1990). The politics of disablement. Basingstoke: Macmillan and St Martins Press Oliver, M., (1997). Emancipatory research: realistic goal or impossible dream. In: Barnes C, Mercer G, editors. Doing disability research. Leeds: Disability Press; Pp. 15–31. Robine, J. M., Michel, J. P., (2004). Looking forward to a general theory on population aging. Journal of Gerontology, Vol.59, Pp. 590–97. Switzer, J. V., Vaughn, J., (2003). Disabled Rights: American Disability Policy and the Fight for Equality, Georgetown University Press, Pp. 197 - 199 Tracey,D.K. (2002).Self-concepts of preadolescents with mild intellectual disability: multidimensionality, measurement and support for the Big-Fish-Little-Pond-Effect. Unpublished PhD Thesis, University of Western Sydney, Australia Wunderlich, G. S., Kohler, P. O., (2001). Improving the Quality of Long-term Care, National Academic Press, Pp. 5 - 9 Disabled World (2010). Definition of Disability Accessed: May 23, 2010 [online] from: < http://www.disabled-world.com/definitions/disability-definitions.php> ICF (2001). World Health Assembly: International classification of functioning, disability and health. Accessed: May 22, 2010 [online] from: UN High Commissioner for Human Rights (2006). Convention on the rights of persons with disabilities. Accessed: May 22, 2010 [online] from: WHO (2001). International classification of functioning, disability and health (ICF). Accessed: May 22, 2010 [online] from: WHO (2010). Disability: Definition, Accessed: May 23, 2010 [online] from: < http://www.who.int/topics/disabilities/en/> Read More