Reclaiming the Disabled Sexual Self

Arlene Jackson reflects on sexuality, empowerment and discrimination in Samantha Renke’s 2022 memoir ‘You are the Best Thing Since Sliced Bread’.

Book cover for Samantha Renke's "You Are The Best Thing Since Sliced Bread"Amongst the many themes in Samantha Renke’s memoir, You Are the Best Thing Since Sliced Bread (Ebury, 2022), her account of her sexual experience as a disabled woman in an ableist world is most illuminating. Renke, who has lived with Osteogenesis Imperfecta Type 3 (commonly known as Brittle Bone condition) since birth, establishes sexual expression as central to her narrative. She introduces herself to the reader by stating her adoration of ‘fashion, the handbags, the shoes, the whole shebang’ (2022, 14), as fundamental to our understanding of her.

Intersections of sexuality, illness and disability are honoured within The Roper-Logan-Tierney model of nursing (Roper et al., 1985). Based on activities of daily living (ADLs), this concept recognises the expression of one’s sexuality as a necessary activity of daily living, equal to breathing, eating and drinking, working and playing and sleeping. I employ the model as a framework to analyse Renke’s text, centring Roper and colleagues’ assertion that sexuality is beyond biological: that is, it encompasses body image, self-esteem and the wearing of ‘personal adornments, perfumes and cosmetics’ to present our internal image externally, with image modification related to significant emotional effect (1985, 13).

Renke’s flair for fashion, hair and make-up is repeatedly challenged by societal prejudice. She writes: ‘No amount of reinvention, blonde highlights or push-up bras can penetrate the layers of stereotypes, systemic ableism and oppression that come with being three feet tall and a wheelchair user’ (2022, 198). She reflects on the prejudicial gaze which she has been subjected to all of her life, observing that pre-adolescence, ‘it was mostly followed up by an ‘ah, bless,’ or some kind of free gift.’ Conversely, as she grew older, the gaze shifted to one of desexualisation: ‘Intended to make me feel ugly. A freak’ (2022, 191).

We cannot rely on the inclusion of ‘sexual expression’ within the ADLs to challenge such discrimination. The RLT model is widely employed within the UK public sector (Timmins and O’Shea, 2004) as a tool to assess how an individual’s life has changed due to illness and impairment. However key determinates on how relative or complete independence may be maintained, have become little more than a box-ticking exercise by health care practitioners (Roper, 2002). Such practices negate the scope of the model which, Roper (1996, 295) as co-author states is a result of a failure amongst practitioners to account for five determining factors, including biological, psychological, sociocultural, environmental and politico-economic determinants.

Acknowledging biological influences includes the impact of overall health on both independence and quality of life. As a nineteen-year-old, Renke underwent surgery for severe scoliosis of the spine. She movingly describes the medical consequences without surgery: ‘My spine is so compressed that I don’t even have a neck […] I really don’t want to die’ (2022, 70-71). Yet, her contextualisation of her experience as influenced by sensual and sexual concerns is equally meaningful. Prior to surgery, she ‘resented’ the curvature ‘because I was such a fashionista and the curve in my spine meant that clothes didn’t sit properly’ (2022, 66). As an adult, she reflects that ‘it wasn’t my body that was wrong, it’s the designers who don’t embrace diversity.’ Contrarily, as a teenager, she had employed denial as a coping mechanism: making use of one part of her identity (her long hair) styled loose down her back, to mask another (2022, 66).

Renke’s sexual identity is further challenged by the potential risks of surgery: ‘If I do lose sensation from the nerve damage, I may not be able to feel my bean either’ (Renke 2022, 71). That this fear was not explored by clinical staff highlights Roper’s (1996) concern that within settings such as surgery ‘it is common for the activity [of] “sexuality” to be disregarded.’ Thankfully, Renke had the support of her mother and relates the breaking of familial taboo on this subject during their time together as she recovered from surgery.

‘Can you feel your little bean?’ [Renke’s mum] asks. We look at each other in horror, neither of us quite believing she has just said this.

‘Yes, yes, I can!’

‘We both sob and laugh all at once.’ (2022, 80)

Renke shares the confidence she gained from her post-op bodily change: ‘I looked unrecognisable; straighter, taller. My clothes fitted me better […] my breasts were now more asymmetric’ (2022, 104). Such a retelling informs the reader of the intricacies of disabled embodied experience, intensifying the impact of her later recounting of bodily doubt when, in her thirties, a co-diagnosis of Dentinogeneisis imperfecta (a disorder of tooth development) leaves Renke ‘devastated, mortified, enraged’ as she loses her teeth (2022, 209). Her concerns of ‘What about kissing? Heck, what about giving a blow job?’ challenge sexual taboo while offering an authentic portrayal of the impact of physical difference on the psyche.

The RLT model (2000) states that a holistic psychological approach should account not only for the impact of emotion, but cognition, spiritual beliefs and the ability to understand. This process is described by Roper as the individual ‘knowing, thinking, hoping, feeling and believing’ (Castledine, 2003). Renke knows that she ‘is a catch’ and via critical thought on her hopes and feelings has come to believe that ‘the things I hate most about my body – like my asymmetrical boobs or my translucent, discoloured and brittle teeth – came from people telling me I should feel embarrassed or ashamed’ (2022, 210).

Renke perceives ableism as a learned behaviour and calls for public health interventions within schools to educate children how, ‘disabled people have the same romantic thoughts, sexual desires, lusts and fantasies as anyone else’ (2022, 253). This subjective articulation on the politics of disability is relevant to Roper’s (2002) recognition of politico-economic influences as the fourth determining factor on ADLs. This determinant addresses issues such as government policies and programs, access to funding and benefits. Renke relates the economic impact of disability on her dating life ‘where others may have hopped on a bus or underground to meet this guy, I paid over £40 for a round trip in an [accessible] black cab’ (2022, 232).

Finally, Roper (2002) discusses sociocultural factors associated with sexuality and disability. This pertains to the impact of society and culture as experienced by the individual. As regards relationships and dating, Renke notes unconscious bias within her social world: ‘I cannot remember a time when friends or family have asked if I’m dating or even if I’d like to be a mother one day’, before relating that when disabled people are in a relationship, ‘their partner is assumed to be a caregiver, sibling or a friend, but never the lover’ (2022, 219). For Renke, such prejudice has been evident from an early age. The boys who found her attractive at school would hold her hand under the table, but not in public (2022, 228).

As an adult, she has ‘been a one-night stand, a friend, but never a girlfriend. A fetish, a dirty little secret, a sexting partner, a phone sex collaborator, a drunk gay man’s curiosity fumble, a workplace flirtation, a curiosity fuck, Oh, and the recipient of many a “I think you’re great but…”’ (2022, 222). Renke reflects that in internalising such attitudes, she associated sexual connection with normative ideals. This internalised ableism affected her online dating experience as she engaged in “passing” as non-disabled, excluding her wheelchair from her profile photo, only to face rejection upon sharing her disability (2022, 230-231).

Renke offers powerful insights on vulnerability and risk allied with disabled sexuality. None more so than her forthright recounting of her trauma at being misled by predators who pervert the physical realities of her specific disability: ‘They clearly like the fact that [my] appearance is “young”’ (2022, 233). The impact of such abuse and objectification on both her body and soul is described as such:

I’ve worked so hard to be seen as the intellectual, determined, sexual and sensational human I am. To be asked to dress up as a baby when I am only three feet something tall was a kick in the teeth and made me feel dirty. (2022, 236)

Here Renke centres her intellectual capacities to connect infantilisation, sexism and ableism with the wider sociocultural infantilisation of disabled people. She states that if she reported a sexual assault, she would be met with disbelief ‘by a society that doesn’t think of disabled people as sexual beings’ (2022, 242).

Renke’s experience epitomises the RLT assertion that ‘sexuality is a significant dimension of personality and behaviour’ (1985, 13). Furthermore, her commitment to challenging normative assumptions on self-care, sensuality and desire raise valid concerns on the pervasiveness of ableist ideas on sexuality. Nonetheless, while confiding the darkest times, Renke teases out the many colourful threads including fellowship, inclusivity and activism to create ‘my Superwoman cape, my self-love bubble, [which] shields me from the stares’ (2022, 194). By recounting her experiences through a self-acceptance lens, Renke’s voice is one of empowerment, reminding us that even the most neglected activities of daily living remain essential and deserving of our attention.

About the Author

Arlene Jackson is a postgraduate researcher at Manchester Metropolitan University. As a former nurse who presently lives with chronic illness, Arlene utilises her perspective from the other side of the medical fence to analyse and critique literary and scholarly representations of illness and disability.  Her current project seeks to explore the meaning and value of fiction on audio format to individuals living with sensory impairments specific to Myalgic Enchephalomyelitis. Through collaborative research practice, Arlene explores stigma, epistemic injustice and literary exclusion – with an aim to amplify the voices of her co-contributors. She is available for contact at arlene.jackson@stu.mmu.ac.uk

References

Castledine, George. 2003. We need to value those with nursing experience. British Journal of Nursing vol. 12, no. 10: 639.

Renke, Samantha. 2022. You are the Best Thing Since Sliced Bread, London: Ebury Spotlight.

Roper, Nancy, Winifred W. Logan, and Alison J. Tierney. 1985. Model of Nursing: Explanatory Booklet. Dublin: Eastern Health Board. Dublin South East. Area 2. Community Psychiatric Service.

Roper, Nancy. 1996. The Roper-Logan-Tierney. Blueprint for use of nursing models: education, research, practice, and administration 14: 289 – 314.

Roper, Nancy, Winifred W. Logan, and Alison J. Tierney. 2000. The Roper-Logan-Tierney model of nursing: based on activities of living. London: Elsevier Health Sciences.

Roper, Nancy. 2002. Interview by members of the Royal College of Nursing (RCN) Association of Students at RCN Congress, Harrogate. Reported in Fall 2002 edition “The Answer” (RCN).

Timmins, Fiona, and Joan O’Shea. 2004.  The Roper–Logan–Tierney (1996) model of nursing as a tool for professional development in education. Nurse Education in Practice vol. 4, no. 3: 159-167.

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