“Why does she like putting the glass bottle near her pee-hole? She couldn’t talk and tell us what was going on…what did she exactly want? What was in her mind?… [I]t was very hard to figure that out…but I had to keep working on this because we work with special children and we are special educators.”

Savita, a special educator who works with intellectually disabled people, shared this story about her young adult student Reema[1] with her fellow teachers during a sexuality training workshop in August 2019 at the Rainbow Foundation, a special school (a school for children and young adults with intellectual disabilities) and vocational center in Pune, India.[2] Savita claimed that Reema liked the hardness of the glass bottle, but since she thought the glass was too dangerous for Reema, she asked Reema to hold hands with a male classmate, Sumit, replacing the bottle with the touch of a man’s hand. The story ended with Savita saying that over time, Reema started rejecting the bottle herself and did not want to use it anymore.

I open with this vignette to illustrate how special educators in urban India present themselves as, and train each other to become, experts with privileged insights about their intellectually disabled students. In this case, Savita showcases her expertise in interpreting and “figuring out” Reema’s sexual desires. People with intellectual disabilities — a heterogenous umbrella category — often require assistance with everyday tasks (i.e. eating, bathing, transportation) and their linguistic communication cannot be taken for granted. During my ethnographic fieldwork in Pune, I noticed that in addition to teaching — broadly defined to include working on everyday skills, basic language training, and vocational education — special educators played a large role in the lives of their intellectually disabled students. They helped them with washing up and using the toilet, reminded them to take their medication, and kept them company during meals.

In the absence of conventional communication, special educators responded to the perceived needs of their intellectually disabled students by interpreting unconventional linguistic cues (such as utterances and non-linear sentences) and non-linguistic cues (such as actions and behaviors) — communicative repertoires they developed through familiarity and routine. I argue that these communicative repertoires extend to matters of sexuality as well. Following Foucault’s (1976) understanding of sexuality as a uniquely privileged site to establish personhood, I contend that it is important to pay attention to how and why special educators interpret the sexuality of their students. I propose that by making “expert” interventions into the sexuality of their students, special educators carve out an identity for themselves as indeed being “special,” creating a sense of authority. In the absence of institutional status and monetary remuneration, interpretations around sexuality become grounds for authority for special educators in the Indian context. Importantly, their interventions have consequences for the kinds of sexual opportunities, and more broadly, forms of personhood made available to intellectually disabled people.  

Disability studies scholars who engage with intellectually disabled people have made important arguments about how people in positions of power, such as institutional administrators, caregivers, educators, and even family members, marginalize, erase, and regulate the sexuality of intellectually disabled people. This body of literature reveals that people with intellectual disabilities are routinely dehumanized and seen as having a “lesser” version of sexuality because of their intellectual or functional limitations (Gill, 2015; Wilson et.al, 2011). For this reason, in contexts as diverse as the US and Europe in the early 20^th century, to Brazil and India in the current moment, the sexuality of intellectually disabled women has been controlled through procedures such as forced sterilization (Block, 2002; Stri Kruti et.al, 1994). Even during my fieldwork, I came across people in positions of authority rationalizing the need for intellectually disabled women to undergo the procedure of hysterectomy. They argued that the procedure would make life more comfortable for caregivers as well as the women themselves. 

Indeed, at the Rainbow Foundation and other special schools, vocational centers, and residential homes for people with intellectual disabilities in Pune, I observed how sexuality operated as a key domain in which special educators exercised their expertise. In these spaces, the sexuality of intellectually disabled people was as a significant topic of conversation for special educators. They discussed the appropriateness of their students’ clothing, which students had crushes on whom, and whether and in what ways students should be allowed to touch themselves and others. In making confident claims about the sexuality of their intellectually disabled students, special educators positioned themselves as experts.

Thus, while I agree that it is crucial to take account of the power differentials that work against intellectually disabled people in institutional and kinship networks, I also consider the diverse ways in which stakeholders, such as special educators, make attempts to communicate, interpret, and sometimes, even facilitate matters of sexuality. In doing so, I decenter approaches to sexuality that presuppose the rational, independent, and private sexual agent to suggest alternatives to the concept of sexuality that are relational and actualized through the interpretations and actions of multiple actors (Kulick and Rydström, 2015).

To better understand the relational context between special educators and intellectually disabled people, I draw on scholarship that highlights how personhood for intellectually disabled people is produced through relationships of care, dependence, and facilitation with other people, institutions, and technologies (Rapp and Ginsburg, 2011;  Rutherford, 2020; Wolf-Meyer, 2020). These scholars point to the ways in which parents recognize, interpret, and advocate for the personhood of their intellectually disabled children. Parents act as “radical translators” for their children by translating the utterances and behaviors of their children for the normative world (Hart, 2014). In my work, I focus on the domain of sexuality and examine the ways in which special educators make interpretive engagements to assess whether and in what ways they construct, assist or facilitate the sexual needs of intellectually disabled people.

In light of this discussion, I want to revisit the opening vignette. It can be said that Savita’s actions opened some doors for Reema — she got to hold hands with Sumit, got foot massages from him, and went to the mall with him. But it can also be said that Savita’s actions closed certain options for Reema — maybe Reema wants more than handholding. Maybe she still finds ways to use the glass bottle but does it in privacy. Instead of suggesting that the interpretations and actions performed by Savita only had positive outcomes for Reema, I propose that there is a need to contextualize the scene as presented by Savita. How did Savita conclude that the glass bottle was dangerous for Reema? How did Savita know with certainty that Reema was happy holding hands with Sumit? And what position, privilege, and expertise makes Savita an authority regarding Reema’s sexuality?

What I advocate for is an ethnographic approach that takes the relationships between special educators and intellectually disabled people seriously, and looks at both as being enmeshed in power and status relations, wherein neither possesses absolute power in the broader context. This approach acknowledges Reema’s personhood, and Savita’s position of relative power and lack of power, while also exploring her role as a possible facilitator. Adopting this lens would require special educators to look inwards to interrogate their own intentions and ideologies regarding their interventions. This opens up a space where sexuality is understood as relational and open-ended, where autonomy and facilitation need not be at odds, and where special educators perform interpretive work, but do so in order to expand the sexual options available to intellectually disabled people.

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Shruti Vaidya is a fourth year PhD student in the Department of Comparative Human Development at the University of Chicago. Her research focuses on the intersection of disability, sexuality, care, and expertise in the Indian context. Her current project analyzes the ways in which special educators in India construct, interpret, and act upon the sexual behaviors and actions of their intellectually disabled young adult students. In the future, Shruti proposes to conduct research on questions of disability, communication, and personhood and to explore the role of disability professionals and experts in cross-cultural contexts.

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Notes

[1] Pseudonyms used for individuals and organizations.

[2] Special school is the term used by my research participants and policy documents in India to refer to schools for children and young adults with intellectual disabilities. Following Linton (2006), I recognize that the term special education is problematic as it has euphemistic connotations that obscure the reality that neither intellectually disabled children nor their education are actually considered special. I hold onto this category because I take seriously the work that it does in these contexts, and I ask how intellectually disabled people and educators are produced as “special.”

References 

Block, P. (2002). Sexuality, parenthood, and cognitive disability in Brazil. Sexuality and Disability, 20(1), 7-28.

Foucault, M. (1976). 1990: The History of Sexuality, Vol 1: An Introduction. Trans. Robert Hurley. London: Penguin.

Gill, M. (2015). Already doing it: Intellectual disability and sexual agency. Minneapolis: U of Minnesota Press.

Hart, B. (2014). Autism parents & neurodiversity: Radical translation, joint embodiment and the prosthetic environment. BioSocieties, 9(3), 284-303.

Kulick, D., & Rydström, J. (2015). Loneliness and its opposite: Sex, disability, and the ethics of engagement. Durham, NC: Duke University Press.

Rapp, R., & Ginsburg, F. (2011). Reverberations: disability and the new kinship imaginary. Anthropological Quarterly, 84(2), 379-410.

Rutherford, D. (2020). Proximity to disability. Anthropological Quarterly, 93(1), 1453-1481.

Stri Kruti et. al (1994). In the Guise of Human Dignity, 1-18. 

Wilson, N. J., Parmenter, T. R., Stancliffe, R. J., & Shuttleworth, R. P. (2011). Conditionally sexual: Men and teenage boys with moderate to profound intellectual disability. Sexuality and Disability, 29(3), 275-289.

Wolf‐Meyer, M. (2020). Facilitated personhood. Journal of the Royal Anthropological Institute, 26(1), 167-186.