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How Disability Should Be Researched?
This paper seeks to illustrate, the type of research in disability studies, which has been the topic of interest for academics, doctors, and in general experts should shift from participatory to emancipatory (Oliver, 1983). Furthermore, it will draw attention to the social model of research in disability studies rather than the conventional medical model in which doctors are the most powerful as opposed to disabled people who are seen as the most powerless (Barnes, 2003).
This paper will argue that the emancipatory research which first appeared in academia by (Oliver, 1983) is a novel research paradigm against old models of research in social sciences, which gets the power from doctors and researchers, and gives it back to their research subjects who are people with disability (Barnes, 2003).
Emancipatory research as this paper will focus on acknowledges the historical, cultural, contextual, environmental, and physical oppression that disabled people have gone through, and simultaneously demonstrates how research per se is always influenced by politicized values and interests (Oliver, 1992).
This paper will attempt to put forth that the social model of research is determined to empower disabled people instead of looking at them as people who live in gloom and doom, and also it is intended to bring social justice by making a difference in disabled people’s lives after the research is over (Barnes, 2003). The question that arises here is: can emancipatory disability research and social model offer anything different? I would argue that they would and they have so far (Oliver, 1983).
Disability is a long-term social state that is incurable, and the medical intervention at best would be inappropriate, and at worst oppressive (Oliver, 1983). This can get doctors bewildered when they encounter disabled people who reject their imposed treatment (Oliver, 1992). What disabled people demand from society is not treatment nor cure, but an acceptance condition in which experts do not try to restore them to what they should be. Some professionals use the term people with disability instead of disabled people to acknowledge that there is a real person before disability (Oliver, 1992).
In 1992, Mike Oliver published a paper claiming that social research on disabled people almost has had no effect on its subjects’ lives, nor has it been in any sense influential on policy making process of the government. He further argues that the process of social research on people with disability has been very alienating both for the researchers and for their subjects, and the only way out of this vicious cycle is to change the social relations between them (Oliver, 1992).
Basically, Oliver puts forth that disability is a social construct generated by the society itself, and utilizing research models such as medical is the easiest way to locate the impairment in the disabled individual himself, instead of detecting it somewhere out there in the society (1992).
He defines disability as social oppression and a long-lasting struggle for disabled people (1992). Besides, in the recent years disabled people have recognized that they are being accused of producing disability, since their problems are being underpinned constantly by doctors and experts (Oliver, 1992).
The reason why social relation of research is crucial is because the social relation determines the structure in which research takes place (Oliver & Colin, 1997). Furthermore, the topic that is investigated, subject selection, and everything else is prepared and planned by researchers. So, what is left for disabled people to decide about with considering: It is their life that is being explored during research (Oliver & Colin, 1997).
Oliver (1992) believes that a research conducted by a group of experts who only use disabled people to finish their doctoral degree or job contract without placing adequate value on their subjects’ experiences and emotions is seriously flawed.
Participatory research model requires researchers to put all their knowledge and skills at the disabled people’s disposal, and include their research subjects in every step of research (Barnes, 2003). On the other hand, emancipatory research goes even further than that by demanding researchers to step aside and let the research run by their subjects (Barnes, 2003). Therefore in emancipatory research, researchers are supposed to let disabled people include the information that they think should be included in the results (Bernard, 2013).
Whatever research model to explore disability or any paradigm we use for interpretation of our qualitative data, whether it is individual, social, administrative, or charity model are not supposed to obscure our way to real issues that are constructed by society and are dealt with on a daily basis by disabled people (Oliver, 1983).
Oliver argues that other research models such as individualistic model as opposed to social model place the problem in disabled individuals (1983). Also, they see disabled people’s limitations due to their body impairments, instead of realizing that the limitations and barriers are there due to lack of accommodation on behalf of the society in which the disabled people live and have rights to be fulfilled (Oliver, 1983).
Medicalization of disability on the other hand, does the same thing by locating the problem in the individual and seeing doctors as experts who are there to solve all the issues that disabled people deal with, and also exert control over their lives (Oliver & Colin, 1997).
Linda Morrison regarding psychiatric patients who struggle with the label of their mental illness that their doctors diagnose by using diagnostic and statistical manual of psychological disorders says: "I would like to see us drop the whole medical thing and see where we can go with the other, with the philosophical, the metaphysical, with the psychological. We have this political animal called the DSM-IV [Diagnostic and Statistical Manual]. And that's political. And that's how everyone is gauged. But that's not by us, that's by psychiatrists. It needs to be by us."(2006)
What social model does is totally different from alternative models (Barnes, 2003). It does not deny the problem of disability, however locates it directly in the society by taking into account that the root of the disability issues is not in individual’s limitation but in failure of society in providing adequate and appropriate services (Barnes, 2003).
It is worthwhile mentioning that the consequences of this failure is not a pitfall only for a disabled individual but for disabled people as a whole, displaying itself in various forms of discrimination and social oppression (Oliver & Colin, 1997).
Medical model or in other words medicalization of disability gives a fake power to healthcare providers particularly doctors to have control over the lives of people with disability, because often disability is confused with illness (Oliver, 1992). As a result, doctors constantly try to get disabled people normal and return them to the condition of normalcy. This is a highly stigmatized issue in our society, since instead of accepting every person the way they are, society tries to normalize them (Oliver, 1992).
Medical model as Bircher states is based on cure or prevention and closeness of individuals to the state of normalcy; also healthcare providers identify independent as someone who is able to self-care, but not necessarily someone who has control over his physiological as well as psychological life (2000).
Bircher (2010) claims that the medical model proves healthcare professionals have a huge role in marginalization of people with disability. He also believes that doctors are available for disabled people to earn money or gain power which both lead to doctors’ empowerment (Bricher, 2000).
The social model is not an attempt to get the power completely from doctors and give it back to disabled people, however is a trial to teach experts how to give up power and teach disabled people how to empower themselves (Oliver, 1992).
If experts and disabled people work together within the parameters of the social model, a permanent cure might not happen, but a better relationship is guaranteed between them (Barnes, 2003).
In essence, the emancipatory disability research is about empowering disabled people through the transformation of material and relations of research procedures (Barnes, 2003). Emancipatory disability research is a barrier removal that aims to transform the lives of people with disability by impacting the cultural, environmental, economical, and political agendas of the system in order to generate social justice in favor of disabled people (Barnes, 2003).
Despite the enormous attempts by some researchers to conduct an emancipatory research, it is not implemented explicitly in the disability research field (Barnes, 2003). However, due to a combination of many factors such as the disability movement across the globe and activities of influential groups predominantly disabled authors and researchers, many implicit emancipatory research practices are done (Barnes, 2003).
Emancipatory research is meant to be directly linked to disabled people’s life issues, and strive to transform public policies in order to make a real difference in disabled people’s lives after finishing the research as opposed to many research projects that are only done for materialistic reasons (Clear, 1999).
Emancipatory research does not see researchers as experts; instead it strives to consider disabled people as experts of the research that is conducted on them utilizing their time, energy, and privacy (Bricher, 2000). Furthermore, social model is a model that refuses to see the disability in an individual body, instead tries to see it in disabled people together as a social construct with is oppressive and discriminatory (Oliver & Colin, 1997).
Conducting an emancipatory research that reflects the social model of disability research is not an easy task and also very ‘monstrous’ as Clear (1999) states that the type of research, which explores the repressed issues of disability, is called ‘monstrous’ versus normal research that conceals the substantial knowledge and exerts control over the research results.
In general, regardless of the type and label of research model, researchers should get their subjects on the topic, get out of their way, and let them provide the information that they think is important (Bernard, 2013).
Overall, the social model of disability is a core component of emancipatory research paradigm. Two decades ago, the social model was a radical move within the conventional research models of the day, however this is no longer valid since the social model seems to be a new orthodoxy within the social science research pool (Barnes, 2003). It is vital to note, that the social model of disability research does not ignore the cure and treatment of impairments, however it places the emphasis of limitations within the society that systematically and constantly devalues the people with disability, and considers their lives as a personal tragedy (Barnes, 2003). While, the real tragedy is living in a society that discriminates, oppresses, and degrades the people who are identified by physical and cognitive barriers (Barnes, 2003).
References
Barnes, C. (2003). What a Difference a Decade Makes: Reflections on doing 'emancipitory' disability research. Disability & Society , 3-17. Bernard, R. (2013). Social Research Methods: Qualitative and Quantitative Approaches. Thousands Oak: SAGE Publication, Inc. Bricher, G. (2000). Disabled People, Health Professionals and the Social Model of Disability: can there be a research relationship? Disability and Society , 781-793. Clear, M. (1999). The 'Normal' and the Monstrous in Disability Research. Disability and Society , 435-448. Morrison, L. J. (2006). A Matter of Definition: Acknowledging Consumer/Survivor Experiences through Narrative. Radical Psychology , 60-79. Oliver, M. (1992). Changing the Social Relations of Research Production. Disability and Society , 101-113. Oliver, M. (1983). The Individual and Social Model of Disability. London: UPSIA. Oliver, M., & Colin, B. (1997). All We Are Saying is Give Disabled Researchers a Chance. Disability and Society , 811-813.