Narratives, Stigma, and Disability

Author: Yudai Kaneda

School of Medicine, Hokkaido University


Introduction:

There are various definitions of "self". For example, Neisser defines the self as "something that comes to each of our minds when we think about ourselves".1 Freud says that the self is something we can feel for ourselves and is directly related to others.2 The recent idea of the self is that it is not just something that exists, but something that is sensed.

”Stigma" was originally a Greek word that meant a mark imprinted on the body to distinguish and indicate people who were abnormal or bad, such as slaves, criminals, and rebels. Nowadays, it is defined by the American sociologist Goffman as a mark that is or can be considered unusual (e.g., inferior, dirty, imperfect) in a negative sense if one has it.3

The term "narrative" is translated as "story," and it is a clinical method in which the doctor tries to understand the background of the illness and human relationships from the "story" that the patient tells through dialogue, such as the reasons and circumstances of the illness, and how he or she thinks about the illness now, and to approach the patient's problems holistically (physically, mentally, psychologically, and socially).4

Disability is a multidimensional concept that encompasses "impairments in physical structure or function," "limitations in abilities," "environment," and "participation," defined as "limitations in abilities necessary to participate in daily life".5

This report will discuss what problems arise when people with disabilities are stigmatized by others or themselves, and how narratives can be used to resolve these problems.


Body:

A recent large scale empirical international comparative study on stigma or discrimination experienced by people with mental disorders (covering 27 countries and regions) shows that stigma against people with mental disorders is a common issue across countries and regions.6 For example, regarding people with schizophrenia (n=732), it was reported that 30% of the subjects had experienced discrimination in finding or keeping a job. Against the backdrop of the serious stigma against people with mental disabilities, there is a growing international focus on correcting the stigmatization of people with mental disabilities, especially in Europe and the United States, but there is also a growing interest in the self-stigma of people with mental disabilities themselves.7

In fact, when people with disabilities are stigmatized by others or themselves, it can cause a variety of problems, such as negative thoughts about themselves, difficulty maintaining mental health, loss of self-affirmation and self-confidence, and difficulties in communication. However, according to the Contact Theory proposed by Allport in 1954, it is hoped that stigma can be reduced by engaging in quality interactions with stigmatized people.8 Narrative based medicine provides a way to deal with existential qualities such as inner wounds, despair, hope, grief, and moral distress that frequently accompany and may even constitute people's illnesses. Contemporary advanced medicine lacks indicators for the existential qualities such as inner wounds, despair, hope, grief, and moral pain that often actually constitute the more frequent illnesses people suffer from and the more advanced technology.9 However, the value of narrative based medicine as well as evidence based medicine should be revisited in order to focus on and accompany the background of patients who are stigmatized by themselves or by others due to their disabilities.


Conclusion:

The problems involved in the perception of self, such as disability and stigma, interact with each other and have a significant physical and mental impact on human beings. Therefore, the importance of narrative based medicine needs to be reaffirmed as it is necessary to provide medical care that is appropriate for each individual in order to improve the situation.


References:

1. Neisser U. Five kinds of self-knowledge. Philosophical Psychology. 1988;1(1):35 – 59.

2. Sletvold J. The ego and the id revisited Freud and Damasio on the body ego/self. Int J Psychoanal.2013;94(5):1019-1032.

3. Goffman E. Stigma: Notes on the management of spoiled identity: Simon and Schuster; 2009.

4. Zaharias G. What is narrative-based medicine? Narrative-based medicine 1. Can Fam Physician.2018;64(3):176-180.

5. Linden M. Definition and Assessment of Disability in Mental Disorders under the Perspective of the International Classification of Functioning Disability and Health (ICF). Behav Sci Law. 2017;35(2):124-134.

6. Lasalvia A, Zoppei S, Van Bortel T, et al. Global pattern of experienced and anticipated discrimination reported by people with major depressive disorder: a cross-sectional survey. The Lancet. 2013;381(9860):55-62.

7. Thornicroft G, Brohan E, Rose D, Sartorius N, Leese M, Group IS. Global pattern of experienced and anticipated discrimination against people with schizophrenia: a cross-sectional survey. Lancet. 2009;373(9661):408-415.

8. Bridges DR, Tomkowiak J. Allport's Intergroup Contact Theory as a theoretical base for impacting student attitudes in interprofessional education. J Allied Health.2010;39(1):e29-33.

9. Greenhalgh T, Hurwitz B. Narrative based medicine: why study narrative? BMJ. 1999;318(7175):48-50.

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