Already doing it: intellectual disability and sexual agency

Historically, many of the horrors that intellectually disabled people were forced to endure stemmed from attempts to control their sexuality and reproductive capacity. Unjustifiably, their sexuality continues to be treated as a serious problem which needs to be managed. It is often assumed by carers and staff members that intellectually disabled people are sexually promiscuous and dangerous when their sexuality is awakened, and therefore must be protected and shielded from knowledge. Arguably, this type of protection can be harmful because it can lead to the belief that sexual expression can either be ignored or must be suppressed (Hollomotz 2011; McCarthy 1993).

On page 6 of Already Doing It, Michael Gill states that his work ‘recognises that people with intellectual disabilities are already active agents in their sexual expression, despite compromised privacy in living arrangements and systematic intrusions and oversights’. This central argument reflects my PhD research with intellectually disabled women on locked wards in the United Kingdom (Fish 2016). When I embarked on the project, I was not expecting sexuality to be a major theme; I had been told by staff that all spaces in the unit were classed as public, therefore limiting sexual expression. However, different to some research about women with intellectual disabilities (such as Fitzgerald and Withers 2011; McCarthy 1993), most of my participants did want a sexual relationship, despite experiencing sexual abuse and violence in their pasts. Plus, in the face of high levels of regulation on the unit (attributable to their perceived vulnerability), they found ways to experience these intimate relationships. I think our consensus demonstrates the importance of discussion about this topic.

In the preface and introduction to his book, Gill proposes to:

-	‘examine intellectual disability as an embodied experience and focus on why the condition is constructed as an impairment that seems to require a certain degree of professionalization’ (x; original emphasis);
-	‘trace the contours of sexual ableism while exploring the ways in which certain bodies exhibit their sexuality without regulation or scrutiny, whereas others are subject to continual oversight and regulation’ (3–4);
-	explore ‘the intersections of notions of competency, agency, risk and sexual citizenship to examine how individuals labeled as intellectually disabled disidentify with systems of regulation and oversight in their sexual and reproductive lives’ (4);
-	take the focus on sexuality ‘away from a question of ability (or frequency), to an analysis of the structural and material conditions that facilitate or attempt to limit sexuality or reproduction’ (7); and,
-	using professional literature, historical practices and cultural representations, create ‘a more comprehensive understanding of how the sexuality of individuals with the label of intellectual disability is imagined, represented, and subsequently controlled’ (15).

These are ambitious intentions, but I think Gill achieves what he set out to do; the book brings in material from diverse disciplines: feminist and queer/crip analyses, disability studies, critical race and queer theory, along with exploration of contemporary film, photographic artefacts, and news items from the USA, Australia and occasionally the United Kingdom. All of this is grounded in the backdrop of Gill’s personal experiences and suggestions for change. A fundamental omission is the book features very few reflections from those labelled as intellectually disabled. I imagine this is due to Gill’s focus on structural barriers and mediations, but I also think it demonstrates the historical lack of opportunities for authorship for this group of people, whose voices are generally presented passively as research data.

I admire that Gill purposefully does not define intellectual disability, agreeing with the late Mark Rapley (2004) that the meaning behind intellectual disability is socially constructed, Gill’s justification for this omission is to highlight the ‘artificial and problematic ways in which intellectual disability is defined’ (10). Attempting to describe intellectual disability using the available discourse is always difficult. I am also pleased by his disdain for assumptions of ‘mental age’, which Gill condemns as ‘erasing the embodied knowledge and unique epistemology about life and physical maturity of individuals with intellectual disabilities’ (3). In my experience, these ideas continue to arise in professional communications and contribute to the system of ableism that Gill critiques.

Gill draws on the works of eminent disability scholars such as Mark Sherry, Margrit Shildrick and Licia Carlson, but is not afraid of using his own ideas, such as his analysis of the concept of ‘pity’ and how it relates to notions of capacity. Feeling pity for intellectually disabled people disrupts respect, equality and even justice. Pity, according to Gill, becomes a recognition of power, and hinders the ability of the pitied to advocate for oneself.

Not only does Gill cover important broader issues such as sexual abuse and sex education (the programmes he discusses are USA specific but he provides plenty of recommendations which will transfer to other initiatives), he explores the topic of reproduction, a fundamental and provocative debate in intellectual disability work. Referring to the ‘management’ of reproduction such as forced sterilisation and institutionalisation as ‘eugenic’, he argues that people with intellectual disabilities should be given the ‘space, resources, and legitimacy’ in their desires to parent (143). He wants to ‘smash open or crip the boundaries of family to create space for intellectual disability’ (129; original emphasis) and highlights the neoliberal and capitalist forces that work against the ‘crip/queer potential’ (138), restricting alternative conceptions of family. Motherhood was discussed by the participants in my study; some had birthed children only to have them removed, and others had miscarried due to physical violence. I found that some of the women had internalised what Gill calls ‘sexual ableism’, describing motherhood as potentially too difficult or tiresome. Gill describes services as reinforcing these sexually ableist understandings of fitness to parent, and provides a well-developed argument for reproductive justice, establishing that these ableist assumptions can be challenged by considering disability as something that can enhance parenting (and childhood). This perspective is certainly something that policy-makers should take notice of.

Already Doing It, although generally focusing on policy and practice in the USA, will be useful to international social workers and psychologists, activists and disability scholars. In my opinion, the sexual agency of people with intellectual disabilities is central to the debate on competence, power and equality. Professionals acknowledging this may be the first step towards Gill’s idea of a future where impairments are considered to ‘enhance, not spoil, life’ (194).

Rebecca Fish
Lancaster University, UK
[email protected]
© 2017 Rebecca Fish
http://dx.doi.org/10.1080/09687599.2017.1283838