In Love, Sex, and Disability: The Pleasures of Care (2011), Sarah Smith Rainey passionately examines the subject of care between couples consisting of a disabled person and a nondisabled person. Her re-reading provides a critical missing dialog in feminist discourse on the nature of care in loving and sexual relationships by showing the intimate value of care. Rainey illustrates that the bulk of existing research posits care as a burden most often placed on women (p. 12) and that caring of disabled people is portrayed as stressful, and more often than not, a major factor in relationship disillusion. By providing rich evidence to the contrary, this book offers a catalyst to reframe the understanding that care can manifest in many ways. Rainey moves away from the idea that care is a purely physical task — often delivered by women to men in heterosexual dyads. In her interviews, disabled women often deliver care through emotional and intellectual support, including assisting in matters related to the spouse's career, and nondisabled men provide supposedly traditional women's caring roles — such as cooking and cleaning. Rainey asserts that in many cases care between disabled/nondisabled couples offers a profound aspect of intimacy that enables relationship resilience.
A significant strength of this book is the infusion of Rainey's narrative about having been in a long-term relationship with a disabled man named Max. She exposes how much care meant to her in her relationship, and her discussion of how Max helped shift her view of disability enhances the power of her findings through sincere appeals to pathos. Her closing of the book includes a description of her assisting Max with water therapy, in which she describes the experience as "very intimate and erotic," and she notes, "I will always remember what it was like to feel Max's whole body…in the water" (p. 162). As a disabled person, I read this initially as a reflection of compulsory able-bodiedness, as it seemingly presumes that being able to stand and move freely with one's partner facilitates a great bond, while many disabled people cannot and do not need or want to stand to feel a partner bond. Many of us resist compulsions to try to be as able-bodied as possible and instead adapt the way we perform intimacy to fit our bodies and minds, despite ableist acculturation processes. I expressed this tension to my nondisabled partner, who echoed the same notion of loving to be free in the water with me, because we so rarely get to move so effortlessly without fear of injuring me. Talking with my nondisabled partner about this book helped me have greater reverence for the nondisabled-partner perspective on disability — which is not always a "perfect disability studies" model — but nonetheless reflects genuine embracing of disability culture and studies. If the book is read with this idea in mind, disability studies scholars can find much value in it.
Structurally, the book is divided into two sections: section one analyzes mainstream representations of disability and sexuality — both in dominant media representation, as well as in applied or health fields. Section two contests the mainstream of disability sexuality through textual analysis of autobiographies, data from 12 interviews of heterosexual disabled/nondisabled dyads, and non-dominant media representations of disability and sexuality. Chapter 2 examines the representation of sexuality and care in various types of media — film, theatre, and television. Rainey's lily-pad approach to media analysis is, at first read, problematic as it seems to lack logical and chronological flow. For example, Rainey highlights several older films, including The Men (1950) and An Affair to Remember (1957), along with several current Disney cartoon films, a series in Glamour magazine (2007) on valorous women, and an episode of Law & Order: Special Victims Unit (2006). However, her approach does reflect how people experience the consumption of media — the accumulation of knowledge building from various sources over time. She highlights sex-negative and ableist representations, such as Avatar (2009) and Wicked (2005). Rainey offers one glimmer of hope for sexual representation of disability — the film Coming Home (1978). The film includes a scene that blends care "seamlessly into the eroticism of the encounter" (p. 44) through negotiation of lifting the male partner's paralyzed legs onto the bed before their sexual experience. Other representations of disability and sexuality in mainstream media were not mentioned, including in the television show Glee (2009-present) and the campy film Monkey Shines (1988). Chapter 3 examines how the applied health fields, such as medicine and occupational therapy, reinforce ableism and the assumption that caring for disabled people is harmful and damaging to relationships, as well as overall health. This chapter illuminates how much of the research on care in disabled/nondisabled couples focuses on the voice and issues of the nondisabled partners and presents a slanted view of care as burdensome.
Chapter 4 explores how normative gender scripts are expanded, and sometimes abandoned completely, in disabled/nondisabled couples. In her examination of nondisabled male partners, she posits the men participate in "rewriting masculinity" (p. 69) by engaging "feminine behavior" (p. 72) such as providing emotional and physical care. Much of this chapter was difficult to read as a disability studies scholar, as Rainey focuses on issues between the couples as driven by gendered norms, rather than impacted by ableism. An example of this is when Rainey discusses how the provision of care by nondisabled men is seen as appealing to other women and these women tend to make sexual advances toward the men even when the existing relationship is made obvious. The reading of this type of scenario would have been richer if it included an analysis of how ableism — particularly ableist assumptions of disabled people being asexual — legitimates this type of behavior for many. I found this exclusion particularly problematic, as Rainey suggests ableism is a main framework in which she analyzes her data (p. 12).
Additionally, a gap in the concept of re-writing gender as a bonding factor in disabled/nondisabled couples could have more nuanced if queer couples were included in the study (Rainey admits her sole inclusion of heterosexual couples as a limitation in her introduction). This gap is rather profound, even with the admission of its limitation, as it really could change the shape of the entire argument on gender. Many LGBT and/or queer people do not perform normative gender roles so I wonder how they/we could rewrite gender and its prescribed roles if they have already been queered — or rewritten. This gap left a lot to be desired for, especially as Rainey opens and closes with the need to queer nondisabled/disabled relationships — because they engage in non-normative gender roles and sexual activity (e.g., moving beyond the traditional model of penis-vagina penetrative sex as "real sex").
Chapter 5 engages an exciting exploration of pride and resistance in disabled/nondisabled couples. The wonderful section on humor in this chapter speaks to how much nondisabled people embrace aspects of disability culture. Nondisabled deploy supposed insider jokes about the accidents or problems that sometimes happen when dealing with disability, such as bladder/bowel, assistive device, and personal care attendant issues. Rainey explores how some disabled/nondisabled couples extol a complicated body politic as a mode of resistance against social expectations, in which the pleasures and pains of disability are rendered visible. She rightfully asserts that there is tension in the disability community around these issues, as many of us continue to want "to present only strong and able images to the public" (p. 108). Rainey includes material from Cheryl Marie Wade's work and Lorree Erickson erotic film Want (2007) to prove that more than just her participants expose their realities of disability.
Chapter 6 is an excellent examination of scholarship on love. Rainey discusses the main features that create a successful love bond: trust, respect, and reciprocity. She explores the necessity of intersubjectivity — which includes reciprocal care and the recognition of the need to balance the self with the other. Thus, even in relationships where nondisabled people may take care of many of the activities of daily life of the disabled person, there is still a need for alone time — in which the partners retain individual identities and interests. Chapter 7 explores the sexual pleasures of care. This chapter includes the main lesson people can learn from disabled/nondisabled relationships: in performing the intimate care in assisting in life activities, the partners learn so much about each other and each other's bodies. Through discussing what are supposedly taboo subjects, such as pain and bowel issues, the discussion of sexuality is made easier (p. 151).
Rainey does an excellent job providing a critical piece of missing dialog about the beauty of loving and caring for and by disabled people. However, I found the assertion, "the need for care opens up a diffuse sexuality in which touch and connection are ongoing intimate expressions," to be off point (p. 19). Care cannot be the reason disabled/nondisabled couples experience success, as there is more than care at work in the success of relationships. From Rainey's women's studies perspective, I understand the preoccupation with care — as it has thus far been slanted against disabled people as burdens and unable to care. She rightfully flips that cultural script, opening up space for possibilities about the meaning and exchange of care. But as a disabled sexologist, I was frustrated with the sole focus on care. There is so much more to analyze regarding the disruption of gender and sexual scripts among nondisabled/disabled relationships — or disabled/disabled and/or polyamorous relationships involving one or more disabled people (both types of relationships are not mentioned in the book). When I teach about the nuances of disability and sexuality, many students learn lessons to enhance their sexual health through understanding that many disabled people need time to communicate our abilities and desires, that we may not be able to or interested in spontaneous sexual activity, and that many of us learn how to expand what we perceive as sexual pleasure out of necessity or the artful adaptive qualities of living as a disabled person. While the focus on care misses out on a truly rich analysis of how revolutionary sexual activities with disabled people can be, Rainey's book is a timely and needed analysis of the beauty of expanding the concept of care, to include that given and received by disabled people.
