Considering Gender in Lived Experiences of Dementia
blog by HAPP graduate Mhairi Claire Lynch
My father often hid his need for care and assistance in the early stages of
Dementia. To him, he was still a father, husband, former teacher and avid fisherman. The gendered dynamics of caregiving in domestic and intuitional spaces is a growing field of enquiry within feminist research, as caring roles are most frequently taken up by women worldwide (Sharma et al, 2016), but less attention is given to how dementia impacts the gender identity of those living with it (Sandberg 2018). It is my experience that as dementia progresses, there is not only a loss of autonomy in the person affected but a reshaping of how their gender is performed and perceived resulting in a complete de-gendering, as they lose physical and mental autonomy, becoming ‘other’ or Bülow and Holm’s (2016) concept of a ‘monstrous’ demented identity.
In Undoing Gender, Butler argues that we are never ‘doing’ the act of gender alone, instead, gender is an ongoing, improvisational act shaped by social constraints and performed to others, which include ourselves (Butler 2004, 1). Paradoxically, this makes gender performance a simultaneously subconscious and intentional act which involves a personal sense of physicality and an awareness of the other to whom we are performing - often ourselves. Ahmed (2006, 16 referenced in Sandberg 2018, 28) compared the act of gender performativity to walking on a path: the path is created because we walk it yet it ceases to exist when we stop. How does one with limited physical and mental autonomy perform? And how is that performance consequently perceived when his autonomy has been stripped away?
The body is a political site where ‘sex, gender and power are enmeshed’ (Coole 2013, 166)and consequently, has power over how we are perceived and treated by society. When the body loses its ability to control certain functions, it is frequently feminised (Silvers 2009, 419). The disabled man who cannot perform the gendered action of being ‘the breadwinner’ of a household, for example, may be feminised by others around him. Masculinity rarely accommodates differing abilities and physical forms. As Silver notes disabled individuals are often denied access to gendered roles due to perceived differences, regardless of biological capability (2009, 419). Lorber and Moore (2002, 55) when discussing gendered perceptions of disabled men, noted that a presentation of masculinity had to be carried by an ‘aura of independence’, even if the person frequently needed assistance. For men to maintain ‘high status’ in their masculinity, disability had to be something that could be easily hidden or ‘transformed into heroism’ (Lorber and Moore 2002, 55). When disability and a loss of control of the body cannot be contained or heroically framed, society struggles to categorise them. I saw many examples of people feminising my father through their treatment and care of him. They were attempting, for the most part, to be kind, yet through such kindness, it could often come across as infantilisation, a process that relies frequently on the feminisation of the subject.
Many people felt less comfortable visiting my father as his illness developed and he was moved into institutional care. In many ways, I too felt less comfortable visiting him in that
space. Dementia as a disease is frequently understood as existing within an unmarked territory between life and death making the people who are affected by it exist in the ‘abject’. Butler’s conceptualisation of the ‘abject’, drawing from the work of Kristeva, refers to the identities that are marginalised due to their disruption of socially constructed categories like gender and sexuality, going against the ‘norm’ (Butler 1993, 3). Butler’s concept of the ‘abject’—those who cannot be intelligibly gendered—applies to people with dementia, whose identities are often seen as lost or erased (Sandberg 2018, 26).
The ‘abject’ often makes people feel uncomfortable. We are not used to watching someone we once dined with be fed a blended meal. Dementia’s physical and mental manifestations are a stark reminder that the bodily autonomy we conflate with the ‘optimal’ human life can be taken from us. That our bodies are never really our own (Butler 2004, 21). In Bülow and Holm (2016) compare the constructed identity of those with dementia to Weiss’s idea of the “monstrous”’ body, which is marked by ambiguity, instability, and the blending of genders and forms (Weiss 2004, quoted in Bülow and Holm 2016, 80). Dementia, Bülow and Holm (2016, 93) argue, is the monstrous manifestation of ageing ‘incorrectly’. A genderless figure, partly human, yet a living disruption to the healthy lucid aging society idolises.
My father took great care every day in his appearance and naturally as his illness progressed this appearance was harder to control. My father when groomed kept some elements of the ‘abject embodiment of dementia’ at bay (Sanberg 2018, 27). For my mother, it also represented the care that was being taken with him. Although this process of shaving may be a gendered conception of keeping order, it simultaneously showed that he was valued enough to be ‘ordered’. In my experience as a carer, there frequently would be efforts to emphasise masculinity which was intertwined with a sense of keeping a state of dignity. His gender performance was in some way still relational between his family and a remembrance of his ‘past’ self. Gender affirmation, in its relationship with personhood can appear to humanise the ‘monstrous’.
As populations live longer, we must confront how gender shapes experiences of illness and care. In the U.K one in eleven people over the age of 65 have dementia and one in two people within the U.K will be affected by dementia personally or become a carer within their lifetime (Alzheimer’s Research U.K, 2023). The lack of literature surrounding the gendered dynamics of life with PWD mirrors the ‘otherness’ that is often created around bodies and minds that don’t conform to ‘aging well’. A feminist ethics of care should challenge the way we erase gendered identity in those living with dementia and bring ‘monstrous’ identities in from the cold.
About the author :
Mhairi Claire Lynch has recently completed a MA in Conflict Transformation and Social Justice at Queen’s University Belfast. Her thesis focused on Feminist Peace Studies, particularly the aesthetic/artistic representation of women’s conflict narratives.
Books cited
Butler, Judith P. 1993. Bodies That Matter: On the Discursive Limits of "Sex". New York: Routledge.
Butler, Judith. 2004. Undoing Gender. New York: Routledge.
Coole, Diana. 2013. "The Body and Politics." In The Oxford Handbook of Gender and Politics, edited by Georgina Waylen, Karen Celis, Johanna Kantola, and Laurel Weldon, 165–88. Online edn: Oxford University Press.