Disability, Care and Sexuality: Notes from the Field

By Soniya A M

The fieldwork for my Ph.D. research project is on disability, care, and gender. In this essay, I will be sharing some reflections on a recent field visit. I plan to study rehabilitation and care as reflected in BUDs[i] schools/rehabilitation centres for children under 18 years of age with intellectual disabilities. My recent field visit was to a BUDs school in Kozhikode district. Everything looked exciting and the people around me were very friendly. I was aiming to look at patterns of care embedded in the school. There were more than 30 children in the school. Apart from three teachers and one helper, a few mothers were also present there. Through their conversations, I came to know that the mothers went there to assist their children who needed more care than other children present at the school. Since the staff strength was inadequate, teachers in some cases were not able to attend closely to all the children. These mothers said that their children were more ‘disabled’ than the other children in the school. That was the beginning of my conversation with the mothers of children with intellectual disabilities.

Nurturing is overwhelmingly considered a maternal duty. So, when a child has an intellectual disability, the mother becomes the primary caregiver. Based on the responses I got from the field, I gathered that the mothers took on the role of caregivers voluntarily. When a child is born with some sort of an impairment or disability, the father and grandparents (if any) assume the role of secondary caregivers, while the role of the primary caregiver is assigned to the mother. The ‘ideal woman’ is a ‘good mother’ in India.

Children with intellectual disabilities are considered as sub-standard beings in the society. More importantly, the person/child with intellectual disability is not accorded personhood or self-identity by the society. They remain as infants or children in our society. In the BUDs school, the primary focus is on training the children to master day-to-day life skills; they are encouraged to perform everyday tasks such as cleaning plates, eating independently, and so on. Most of the children are encouraged to eat by themselves. But in the school that I visited, there were some children who needed assistance with eating and cleaning their plates as well.

In the conversations that I had with the mothers in the school about care-giving patterns at home, they complained about grandparents, neighbors, and other relatives treating their children as infants! They opined that grandparents and others assisted the children in all activities as though they were ‘infants’. It is very counter-productive to address children with intellectual disabilities as infants. Infants are cared for by others and considered to be completely dependent beings. Instead of interdependence between the disabled child and the caretaker, this infantalizing of children with intellectual disabilities renders them without any agency in society and in the family. It also limits the formation of their personhood. The infantilization of children with intellectual disabilities influences their location and subject position in society. The BUDs school I visited is meant to function as a centre for providing education and care for children with intellectual disabilities. It also acts as a space in which parents as well as children can socialize.

That field work I undertook for my M.Phil. on sexuality of women with physical disabilities revealed that women with disabilities were considered as asexual to a some extent. Similarly, during my recent field trip, I realized that the sexuality of persons with intellectual disabilities is never acknowledged, not even when they are subjected to sexual violence. After several days of interaction with the parents and teachers in the school, they told me that some ‘kids’ were sexually active and that there were several instances of sexual overtures and relationships among the children in the school. I was also told that the teachers were monitoring the children as there were possibilities for potential sexual relationships among them, something they did not favour. I had noticed that some of the children touched themselves while in the classrooms. Teachers told me that given the limited space, they had not been able to have a zero room [ii] in the school.

The teachers seemed to acknowledge the sexual tension of the children in the school, but were watchful of the interaction between children of opposite genders. They were concerned that the reputation of the school would suffer if “something were to happen between the children”. At one point, a teacher told me that she was mindful of the situation and the presences of sexual tension among children, but she preferred to intervene only if things appeared to get out of hand. It would be opportune, at this point, to briefly describe an incident that occurred during my field work. One day, a teenage boy grabbed me with force. I was terrified and the parents and teachers helped me get away from him. After this incident, the boy used to gaze at me and it made me feel vulnerable and awkward in his presence. Thereafter, I tried to maintain some distance from him and, later, I learned, by observing the teachers, how to stop him if he approached me.

This incident was an eye-opener for me. It complicated my position as a researcher inside the institution. The power relation between him and me was a complex one. I identify as a temporally able-bodied person and the move made by the boy made me realize that in that space, my sexuality, gender, and body were vulnerable entities. In such a situation, who is in a position of power and who is vulnerable is key to understanding the politics and dynamics of body, sexuality, and gender within that space. Though BUDs is a place for taking care of children with intellectual disabilities, in this particular situation, the power relation and body politics played out differently. Even though I was feeling vulnerable at one point, eventually, I learned to make him understand that I do not want him to touch me. One teacher told me to say ‘NO’ sharply and when I followed this instruction, he stopped and smiled at me. I also smiled back. The situation from another point of view can be understood as the vulnerable situation of the boy, who cannot express or satisfy his sexual needs. Though the teachers were aware of this situation, one teacher told me they were helpless in such matters. Another teacher also mentioned that outside the school, it was more difficult for the children to express their sexualities. I think this may be because of the ‘child’ image they bear.

Another incident narrated by the teachers is also relevant here. A 17-year-old boy vomited in class and soiled his clothes. So, the teachers were forced to wash his body and clothes. The teacher, Lini[iii], was a young woman of 23 years. She told me that it was very difficult for her to do it. So another teacher helped her in this; she was 28 years old and married. Lini said that she was uncomfortable washing a boy who had attained puberty and was bigger than her in size. It was a relief for her when the older, married teacher volunteered to wash him. The other teacher Shikha told me that since Lini was only 23 and unmarried, it was not appropriate for her to do it. She further added that though he was a child and they, his teachers, it was awkward for them to do these things. Though they did not directly say that being married was useful in such situations, it was indirectly implied so. Thus, the gender of the caregiver and care-receiver become important. .

The female teachers were ready to do it as part of their duty as a teacher and caretaker. As mentioned before, the duty of caregiving is primarily thrust upon women. There are two reasons for this. One, the low salary provided by the local self-government and, two, because women are often considered as ‘natural’ caregivers and the nurturing role is associated with the ‘ideal woman’ image. Special school teachers are also considered as caregivers in BUDs. So, in that respect, women are encouraged culturally to take up care-giving roles and as a result, more women choose this profession than men. Somewhat indirectly, care and its economic devaluation point to the economic, social, and cultural discrimination associated with traditional female roles. Many mothers and teachers from the school told me that after a girl-child reaches a certain age, their fathers are not encouraged to attend to their intimate caregiving activities (such as bathing). If the child is a boy, it does not matter if the caregiver is female. So, gender plays a crucial role in caregiving. The notion that caregiving is a women’s duty when the sexuality of the person with intellectual disability is unacknowledged by the society is a double standard. The experiences I had in the field make it clear that the interaction between the sexualities of caregiver and care-receiver are complex. Political and economic power and the dependency of disabled individuals are interrelated. The political and economic dimensions of care are problematic, particularly in relation to women. It is quite contradictory that women who are largely understood as being dependent and in need of protection are also delegated the primary role of caregiver which entails a negation of the notion of dependency.

Photo: The school premises. Source: Here.

[i]BUDS is partially funded by the government of Kerala and functions under the aegis of the Social Welfare Department and the State Poverty Alleviation Plan (Kudumbasree Mission) administered by the Local Self Governments (LSGs).  The Community Based Participatory Rehabilitation (CBPR) program is implemented through BUDS. The Kudumbaree Mission is implemented by the Kerala Government for the empowerment of women through eradication of poverty.

[ii] According to the teachers of the BUDs school, zero room is a private space for the children to express their sexual urges.

[iii] For reasons of confidentiality, I have changed respondents’ names.

Bio:
Soniya A M is pursuing PhD from Centre for Women’s Studies, University of Hyderabad. Her broad area of research is disability, care, and gender.

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