Who speaks up for Inés Fonseca? Representing violence against vulnerable subjects and the ethics of care in fictional narrative about Alzheimer's disease:Ahora tocad música de baile(2004) by Andrés Barba

Abstract

This paper studies the 2004 Spanish fictional novel by Andrés Barba, Ahora tocad música de baile, one of the first cultural texts dealing entirely with Alzheimer's disease to appear in Spain. It argues that the significance of Barba's fictional novel rests on two important issues: the ethics of representation of violence against vulnerable subjects and the ethics of care. The paper analyses how these two issues allow Barba to create a story in which the verbal and physical abuse to which the person living with Alzheimer's disease is subjected places the reader, on the one hand, as voyeur/witness of the abuse; and, on the other, as interpreter, and ultimately judge, of the fine line that separates euthanasia, assisted suicide and murder. The open ending of the novel defers all ethical and moral judgement to the reader. It examines how the novel offers a monolithic perspective about Alzheimer's disease, in which care is presented as a burden. In fact, this study shows that the novel's multi-layered structure and polyphonic nature places the emphasis on stigmas, stereotypes and negative metaphors around Alzheimer's disease, as found in contemporary social discourses.

Negative stereotypes, fear and social distance: a systematic review of depictions of dementia in popular culture in the context of stigma

“…The interchangeability of the terms dementia and Alzheimer’s disease was also apparent in the research papers themselves. The titles of 21 papers suggested that they focused on the depiction of Alzheimer’s disease [ 26 , 27 , 29 , 32 , 35 , 38 , 39 , 42 , 43 , 46 , 53 , 63 – 65 , 68 – 70 , 72 , 77 , 80 , 83 ]. However, some of these used the terms dementia and Alzheimer’s interchangeably (e.g [ 24 , 32 , 43 , 69 , 70 ]).…”

“…Interestingly, writing by people with dementia also included the living dead frame [ 38 ]. Following on from the notion that they are dead, people with dementia were also described as subhuman - ‘self that unbecomes’, ‘nonpersons’, ‘not human’ [ 35 , 77 ].…”

“…Hussein (2017) [ 34 ] Representations of dementia in Arabic literature Novella: Ghazi Abdel- Rahman al- Qusaibi’s Alzheimer’s, Uqsusa (Alzheimer’s, a tale, 2010); Poetry collection: Hanadi Zarqa’s Alzheimer’s (2014) Saudi Arabia, Syria 12. Raquel Medina (2017) [ 35 ] Who speaks up for Inés Fonseca? Representing violence against vulnerable subjects and the ethics of care in fictional narrative about Alzheimer's disease: Ahora tocad música de baile (2004) by Andrés Barba.…”

“…Books and films about dementia almost all told a story of progressive decline and death, ending in institutionalisation [25,51,52,83], or the death of the person with dementia [28,29,34,35,41,43,44,51,53,54,58,80]. Many books and films depicted the progression of declining ability to comprehend the world, and conduct self-care.…”

“…Guilty, pity and compassion were other feelings related to dementia. Care partners were sometimes depicted as feeling guilt in relation to the care they provided or were expected to provide [25,35,60]. Pity and compassion were suggested as being elicited in relation to dementia [31,71].…”