Drawing on narratives of female caregivers in Thiruvananthapuram, Therese Abraham sheds light on the gendered dimensions of caregivers for disabled persons covered by the government’s Aswasakiranam scheme.
Therese Abraham
As part of my research focusing on caregivers to Persons with Disabilities (PWDs) who are beneficiaries of the Kerala State Government scheme, Aswasakiranam, I interviewed thirty caregiving women in Thiruvananthapuram. The Aswasakiranam scheme has a monetary component disbursed to the caregivers and was brought into effect by the LDF (Left Democratic Front) government in 2010. In this article, I draw from these women’s narratives to highlight the gendered dimensions of caregiving.
There is a predominance of female caregivers for persons with disabilities, as has been observed in different contexts (Ghosh and Banerjee 2016). The role of the father is most often that of a figure who is present but doesn’t partake in an equal division of the labour involved in the caregiving process. In light of these observations, it becomes interesting to note that the beneficiary list of a state scheme providing monetary assistance to caregivers features mostly women. Even in cases where the caregiver has been listed as a male member of the family, in reality, it was the woman who provided the care. On enquiring why the caregiver was the woman and not the male member, most responses resembled those of Reena and Maya1:
Reena: My husband is taking care of the money. The least I could do is be at home and take care of the kids. His name is on the scheme receipt list as we have 2 PWDs at home.
Maya: This is work I do for free. Why would we pay money which can be used for other needs?
Barring a single respondent who stated that it’s not fair that she has to take up the caregiving as well as the household chores on account of being the woman, all the respondents reckoned that caregiving was their domain. The main reasons cited for the same included absence of employment, lack of economic contribution to the family, sex of the person with disability, notions of duty, and family affiliation.
Stereotypes of ‘mothering’ that associate the attributes of tenderness and nurturing with women have effectively led to care work being associated as a domain of the female sex (Ganesh and Risseeuw 1993). The notion of care has a certain idea of femininity attached to it, so much that we see male participation in caregiving only when it is remunerated employment. As Sevenhuijsen (1998) remarks, it is the “the silent logic of natural provision of care” that compels women to take up unpaid care work, and not their male counterparts.
Faiza: How can he [the husband] take care of my daughter? There are certain things only a mother can do.
Most of the women did not say that there was any opposition to them taking up employment. However, the caregiving was to be provided by them, no matter what—this was evident in many cases where even if the woman was employed she would be the one performing all the care functions. In cases where the person with disability was female, respondents stated that having a male caregiver would not work. A similar understanding was portrayed in the 2019 Tamizh movie Peranbu, notably in Amudhavan’s (Mammootty) confusion when his daughter Pappa (Sadhana) starts menstruating.
When asked about whether there was any external help hired to assist in caregiving activities, the reply was in the negative in almost all households. Caregivers remarked that there is not enough money to meet the expenses especially when the same work could be done for free by the woman of the household, pointing to the unpaid and unaccounted labour that women take up at home.
Mary: ‘There goes the mother of that handicapped child’; this is how they address me.
Khadeeja: The other kids used to throw stones at him (PWD) and hit him on the way to school.
The emotional toll that caregiving takes is often overlooked. The social discrimination and isolation faced by persons with disabilities, for example, also affect caregivers. In addition to this emotional labour, female caregivers are also expected by society to constantly perform the role of a “good” and self-sacrificing caregiver. This labour (as opposed to the relatively quantifiable dimensions of physical labour) falls on the female caregiver, which often leads to self-neglect. When asked about the discrimination they and their wards faced, my interviewees gave mixed responses. While some mentioned there was an immense support from neighbours and family, others responded as to how the caregiver would be stared at and the child with disability be physically harmed in some cases. Instances of social interactions were limited in some cases while other respondents said that the person with disability was taken along for whatever social interactions. The latter was often due to lack of any other option or because the events were such that the caregiver was sure that there wouldn’t be any discrimination on account of being disabled.
Eliamma: I can no longer bear this. My body is reeling under all the surgeries I have had and on top of that, my mind is always occupied about Thommu (PWD).
Eliamma is a 75-year-old grandmother who has had to become a caregiver as the child’s mother is abroad for employment, pointing to how caregiving gets juggled between the female members of the household (Chakravarti, 2008; Ganesh & Risseeuw, 1993; Kishore, 2011). During her interview, she pointed to the area where her kidney is, her left ankle and her back and remarked that she has had multiple surgeries in the past year and a half, but is still expected to look after her grandson. The fact that her grandson is getting stronger with age doesn’t help, and she says she cannot manage both the mental strain as well as the physical work.
‘No one really asked. I am supposed to take care as I stay home.’
What I saw in my interactions with caregivers was that they had themselves internalized the understanding that women are primary and natural caregivers. I also observed that the families I spoke to were reluctant to rely on institutionalized care given how valorized the family-based model of care was. There was one family which comprised an aged couple and their two daughters. The elder sibling worked abroad as a nurse while the younger girl with autism had been sent to a convent to be looked after. ‘She will be safe there hopefully and the nuns will take care of her’, the mother said, adding: ‘She just has to help around a little. At this age, we are not able to take care of her and neither do we have money. I just wish there was some way we could keep her at home.’ As we see, even in a situation where external care was sought, the inability to provide care within the folds of the family was lamented upon. The minute her husband left the room to collect the dried clothes from the terrace, she whispers to me: ‘…he does nothing. I have to do it all. This is just to show you. I just hope my daughter is happy.’ When the family-based model of caregiving is praised, the gender aspect within it is not addressed. Thus even when it is claimed that the family is the one providing the care, it is specifically the women who do it. Chakravarthy (2008) calls the women who provide care the ‘reserve army of nurses’ who are assumed to be the backbone of various household-based health policies.
Apart from the broader issues with caregiving, most of the women lamented that the scheme is mere tokenism by the state as the amount provided under it was very small. There were also complaints as to how there is no regular disbursement and often it was transferred in tranches of three to four months. A recent news report pointed out the non-receipt of benefit for the past 9 months due to a paucity of funds. One can only imagine the additional hardships the families, who are all Below Poverty Line, are put through, especially now in the event of a global pandemic. While it’s true that Kerala is a pioneer in providing such an allowance, one needs to look into the expansion of the scope of the scheme—both in monetary and nonmonetary terms.
On the face of it, Kerala features high on the Gender-Related Development Index, Gender Empowerment Measure and Gender Equality Index. However, these testimonies by women caregivers raise doubts about how these indicators manifest themselves in the life of the average Malayalee woman. The Aswasakiranam scheme, as envisioned by the state, doesn’t try to address systemic issues like the unequal gender division of labour, the importance of institutionalized caregiving to reduce the burden on women, or other related dimensions of caregiving. It is a welfare policy aimed at bettering the care given to disabled persons by the family-based caregiver. Social factors are only addressed in terms of the monetary assistance to disabled persons and the recognition of providers of care by creating a database. In fact, one of the respondents expressed happiness in knowing that the state did ‘care’ for them through such schemes even though the monetary aspect was inadequate. The scheme must ideally be restructured in a way that verticals such as gender equality are also provided for. It is true that overhauling years of entrenched patriarchy and other social factors will not be possible through one scheme. However, this can act as a stepping stone for moving towards a more egalitarian society.
References:
- Chakravarti, U. (2008), Burden of Caring: Families of the Disabled in Urban India, Indian Journal of Gender Studies, 15(2), 341–363. https://doi.org/10.1177/097152150801500207
- Ganesh, K., & Risseeuw, C. (1993), Gender: Between Family and State, Economic & Political Weekly, 28(43), 2332–2336.
- Ghosh, N., & Banerjee, S. (2016), ‘Girls with Disabilities in India – Living Contradictions of Care and Negation’ in K. Kannabiran, & A. Hans (Eds.), India- Social Development Report, 2016 Council for Social Development, pp.78-98.
- Kishore, M.T. (2011), Disability impact and coping in mothers of children with intellectual disabilities and multiple disabilities, Journal of Intellectual Disabilities, 15(4), 241–251. https://doi.org/10.1177/1744629511431659
- Sevenhuijsen, S. (1998), Too good to be true? Feminist considerations about trust and social Cohesion. Institute for Human Studies.
About the Author: Therese Abraham is an independent policy researcher based out of Thiruvananthapuram. Her research interests span social justice, disaster management, urban governance, and architectural heritage. This piece draws from the dissertation for her Masters in Public Policy and Governance from the Tata Institute of Social Sciences.
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