Women and Sexual Pleasure: search for and experience of sex, intimacy and pleasure of adult women with a physical disability in the Netherlands.

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[cover photo]

Buurman, G. (1991). Aan hartstocht geen gebrek: Handicap, erotiek en

lichaamsbeleving. De Brink.

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Master thesis

Women and Sexual Pleasure

Search for and experience of sex, intimacy and pleasure of

adult women with a physical disability in the Netherlands

J. W. S. Dekker

Student number – 12581747 Supervisor – Dr. G. J. E. Gerrits

Master thesis Medical Anthropology and Sociology Graduate School of Social Sciences

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Abstract

This thesis describes and analyzes the sexual and intimate experiences of women with a disability in the Netherlands by using the ‘three bodies’ by Scheper-Huhges and Lock (1987): the political, social, and the embodied body. Findings are based on twenty-two semi-structured interviews with adult women with a variety of different physical disabilities. With the understanding of the political body, it became clear how women’s sexuality was stigmatized and ignored in the Dutch healthcare, education system, and housing policies. These structural limitations affected privacy, the ability to cohabit with partners, and information on sexual functioning. Regarding the second body; the social, stigmas of asexuality, and infantilizations became apparent in interpersonal relations. Despite these limiting factors, many women actively dated and sought a partner who understands their reality. Many respondents maintained for filling relationships and stressed the importance of independents to safeguard their romantic relationships. The analysis through the third body, the embodied self, showed the importance of sex and intimacy. To engage in sex, women, together with their partners, adjusted creatively to their ability. Some women mentioned how, through sexual pleasure and their partner’s support, they reconnected with their bodies and increased their self-esteem. Within oppressive political, social circumstances, respondents created sexual and intimate experiences according to their wishes and desires. Through the idea of the ‘three bodies,’ it became clear how women are agentic, despite and because of the non-disabled context they live in, and how, during sex, the body becomes a locus of pleasure and empowerment.

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Foreword

In this thesis, I aimed to centralize women’s stories, to shed some light on experiences that are often overlooked in public discourse. For me, the interviews were eye-opening, sometimes jaw-dropping and cheek flushing. Conducting research was a continuous learning process. I am aware that my position shapes how I have collected data, analyzed, and wrote this thesis. Due to my positionality, I will never fully grasp the experience of my respondents. Still, I hope to contribute by sharing my etic perspectives and foregrounding these often-neglected narratives of my respondents. As Janine wrote to me, ‘finally someone is paying attention to the desires of women!’ Besides this academic thesis, I am currently working with Jacqueline Kool who I met during the fieldwork, to publish a short piece in a magazine, to create more awareness about sexual pleasure and intimacy of women living with disabilities.

My biggest thanks go out to all respondents who were kind and brave enough to share their touching and sometimes spicy stories with me. I am very grateful to have met you (digitally) and shared laughter and insights. The following organizations helped with brainstorming, respondent recruitment, and interviews for which I am thankful: Rutgers, Vilans, BenSajet, Sick en Sex, Intermobiel, ECJP, Happieseks, SAR, and Ultiemezorg. During my fieldwork, I had the opportunity to speak with sex carers and sex care organizations. However, this topic turned out to be beyond the scope of the thesis; I want to thank everybody who shared about their work and activism. Your stories were the foundation for my research. I also would like to extend my gratitude to my supervisor Dr. Trudie Gerrits for her support and feedback – online and on lakesides. I would like to mention Rose and Josie, whose patience and spellcheck abilities I admire. I want to express my appreciation for my housemates, friends, and family, whose support kept me going. Lastly, I want to thank Julius for his honest feedback and love.

Joy Dekker

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1. Introduction

‘Sexual expression is a fundamental right of every individual.’ (Sakellariou, 2006:102).

In the western world, sexuality is perceived to be freely expressed, no longer taboo, and imperative for an individual's well-being (Sakellariou 2006:109). However, ‘several groups of people would recount different versions of this story.’ (ibid:109). A Dutch representative study in 2017 found that 92% of Dutch men and 75% of Dutch women between the ages of 18 and 80 enjoy sex, both for intimate and lustful reasons (De Graaf & Wijsen, 2017). However, this same study found that experiencing sexual problems is twice as high when someone or her/his partner has a chronic illness or condition (Ibid). The contemporary Dutch context and policy do not facilitate and, in some ways, hamper sexuality for people with disabilities (Bahner, 2019: 32). In media, academia, and healthcare, the heterosexual white men’s sexuality is still perceived as the norm. Outside this norm, people’s sexual pleasure and intimacy are not understood, recognized, and prioritized in the same way (Earle, 2001; Tepper, 2000). Although, over the years, research has been conducted on sexuality and disability, the literature is thinly spread over a wide variety of disabilities, has a small sample size, and is often context-specific. Particularly at the intersection of disability and gender, sexual experiences are poorly studied across academic disciplines (Bahner, 2012; Tepper, 2000). This, in turn, leads to the neglect women’s sexual well-being, assisting policies, and proper (healthcare) practices (Basson, 1998; Earle, 2001; Mona, 2003). Disability can - but doesn’t have to - influence women's sexual confidence, identity, desire, function, and ability to find a partner (Basson, 1998:362). Without more knowledge and recognition, taboos and misconceptions about women and their sexual selves prevail. In this study, I would like to build an understanding of the experiences and needs of sexual pleasure of women living with a physical disability by answering the following question: How can the experiences of intimacy and sexual pleasure of women living with physical disabilities1 living in the Netherlands be

understood through Schepers-Hughes and Locks' (1987) notion of the ‘three bodies’: individual, social and political body?

1In this thesis, I only discuss physical disabilities. Due to my recruitment method, this included a

variety of different physical disabilities: I motor disability, chronic conditions, and sensor disability (audio and visual disability). In the methodology chapter, I will future expand upon the diversity of my respondents’ group.

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Word choice - The importance of language

Sonja: “We can talk about it at a great length, but you just have a handicap. That’s the way I see it. My reality doesn’t change if you call it a handicap or a ‘beperking [impairment]’.”

Throughout my fieldwork, I continuously looked for the most appropriate and sensitive wording to refer to my respondents. During the interviews, I asked most of my respondents what language they preferred to use when relating to their disabilities. Contrary to the – mainly American and British – literature, my respondents did not consider language as a particularly sensitive or important topic. They were rather indifferent about how people referred to them. I heard what Sonja told me in most of my conversations; either handicap or disability was used interchangeably. The words Invalide or MIVA – minder valide were considered outdated and problematic. Valide meaning healthy, strong, fulling functioning, (VanDale, n.d.). Iris – 70, wheelchair user – explained to me:

“The theatre in the park still has a toilet sign saying invalide [not valid]. That is so unnecessary in these times! Why? People ask - well, that just means you are worthless. I don’t want that, that is a big no! We don’t have to use that word anymore. But gehandicapte [handicapped] is also not a good one, because you are so much more. So now we use the word beperking [impairment]. That is a bit vague, who doesn’t have a ‘beperking’? I also sometimes say, people with a handicap, but always put people first. Myself, depending on the situation, I sometimes talk about dwarsleet [paraplegic + athlete] or rollie [rolly] because I did wheelchair dancing!”

In this thesis, I used people-first language, ‘which refers to the practice of putting people first and their disabilities second’ (East & Orchard, 2014: 560). During the interviews, women’s experiences of sex and intimacy were center stage, and their disability, among other factors, was secondary to this. Many times, only towards the end of the interview, I found out more about a woman’s disability, but in most cases, I did not know and did not need to know the specifics and details. By focusing on the disability, there is a danger in neglecting womanhood (Barron, 1997: 288). This is why I decided to use ‘women’ when referring to my respondents. Only when relevant for the story or needed to avoid confusion I use ‘women living with disability’ (“Disability Language Style Guide” 2018). The reader is aware that this is the topic of the thesis, and a reminder every sentence about this would unnecessarily overemphasize.

One particular point I want to raise here is that discussing correct wording for me – as a non-disabled woman – is essential and a position of privilege simultaneously. Maaike pointed out

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that she is aware of the ‘politics’ but that for her wording is a matter of effectively communicate her needs to others:

“If I say to people ‘hey I have an auditive disability’, then people might even take it less into account than they already do. I understand that you, as a non-disabled person, are careful talking about a minority. But as a person with a handicap, you have to tell what you can and cannot do, so it is better to explain it in clear language.”

Maaike’s remark shows that discussing wording itself – although very needed – is a privilege. I can permit myself the space to think and negotiate the word-use in my writing. Thus, I need and want to be sensitive regarding word usage, not only because I speak from a privileged standpoint but also because I can challenge problematic language as an ally.

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Literature review & problem statement

‘Conversations are still frequently around heterosexual white men.’ (De Boer, 2015:78)

Normative sexual scripts

Sexuality is a product of society, as society regulates what is normal, what meanings are attached to sexuality, and to what extent women and men have the agency to shape their sexuality (Gijs et al., 2018:30). From birth, people have similar physiological potential to experience sexuality; however, sexuality is developed in the interaction between the individual and society (Helmius, 1999:53). Individuals’ sexuality is culturally constructed as people learn what form of sexuality is ‘normal’ or ‘natural’ through socialization (ibid). Through implicit and explicit messages about sex in media, porn, education, and conversations with others, we learn to follow a socially constructed sexual script about what is ‘normal sex.’ This script is predominantly heteronormative and mainly centers around vaginal-penile penetration with (male) orgasm as the ultimate goal and with women playing a passive role, i.e., “receiving” (Gijs et al., 2018). As Swedish, a study carried out by Bahner shows among people with disabilities, this is a script which for some bodies is impossible to follow (2012:34). Often sex is reduced to the physical and performative parts and not addressing the ability to feel (Sakellariou, 2006:101; Tepper et al., 2001:616). In this thesis, I want to problematize the representation of sexuality and the normative sexual script – and question what sexual pleasure is and feels like for women living with a disability. We need to question what is considered ‘normal’ in particular contexts, as it relates to the freedom to express oneself (Bahner 2019: 27). To move beyond the narrow representation and male-dominated sociosexual script and recognize the diversity pleasure (Rye & Meaney, 2007:28).

Sexuality at the intersection of disability and gender

The different identities of women living with a disability are not separate or opposing but interrelated. These different identities intensify each other and can create unique experiences (Garland-Thomson, 2002). Women living with a disability can face any sex-related problem non-disabled women may face (Basson, 1998), while also facing challenges related to their disability as well problems particular to their gender and disability. In the study of sexuality, the axis between gender and disability causes a double-blind spot. Women’s sexual pleasure is poorly understood (Brochmann & Dahl, 2018; De Graaf & Wijsen, 2017). This lack of knowledge and limited research2 on female pleasure may relate to the limited pleasure many

women experience (Ibid). Meanwhile, sexuality among people with a disability is also poorly

2 For example, while the phallus has been meticulously researched for decades, only in 1998 Helen

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researched, and the sexuality discourse is lacking within disability studies (Tepper, 2000). Women living with a disability endure discrimination in healthcare, employment, and other social relations but are also affected by cultural emphasis on bodily perfection (Crawford & Ostrove, 2003:181). On the other hand, a disability can also limit some of the gender-related problems such as catcalling and body insecurities (Kool, 2010). The sexual experiences of women need to be studied as they are unique and deserve to be recognized as such. An intersectional lens is necessary because depending on gender, the level and type of impairment, age and ethnicity women ‘may experience sexual opportunities differently.’ (Bahner, 2019:28).

Disability, sexuality, and stigma

In academic literature, it is recognized that people with a physical disability have the same range of sexual desire as non-disabled people. Disability does not affect a person’s desire for affection and intimacy (Erickson, 2007; Parker & Yau, 2012:16). However, harmful stereotypes in popular media and medical fields suggest the opposite (Milligan & Neufeldt, 2001). Due to underrepresentation and lack of positive role models, these stereotypes remain salient (Davies, 2000:189). Infantilization induces the idea that people with disabilities are seen as ‘sexless’ or asexual (Milligan & Neufeldt, 2001:99). Families and caregivers often infantilize people with disabilities and are embarrassed or disgusted by people with disabilities’ sexuality (Earl 2001: 434; East & Orchard, 2014). This false representation is harmful since it disregards pleasure, perpetuates an asexual victim status. This, in turn, impacts the quality of life and causes low sexual self-esteem (Tepper, 2000; Erikson 2007:43). These stereotypes can also be internalized as people acculturate with these faulty ideas, and ‘although they want to be sexual, they feel they are not entitled to be sexual.’ (Sakellariou, 2006:109). The limited academic literature on sexual experience and media representation sustains misconceptions and neglects the sexual wellbeing of women living with a disability (Basson, 1998:359; Mona, 2003). Some disability studies do include the study of sexuality, but the research is often one-sided, focused on victimhood, and often disregards the women’s pleasure (Tepper, 2000). This limited research coincides with limited funding and poor policies for the disability-community (Fraley et al., 2007:22). For example, Shakespeare et al. (2019) show that people with disabilities are mostly excluded from all dimensions of sexual and reproductive health services, compressive sexuality education and abortion, and maternal care. Although SRHR has increased visibility and priority on global and regional political agendas, there has been ‘little meaningful implementation regarding the inclusion of persons with disabilities’ (Ibid: 341).

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Indirect logistics

Other contextual aspects can indirectly alter women’s sexual experience, especially women who rely on support services in their daily activities (Bahner 2019: 28). The prerequisites for a fulfilling sex life are not only directly related to sex, such as sex counseling or sex aids (toys) but often indirect logistical aspects: adequate housing, welfare, and transport are essential in creating an enjoyable sex life and taking control over ones’ life (Ibid; Bahner, 2012). ‘Sexuality is the result of the whole person’s life situation. Without the prerequisites for self-esteem and personal independence, there can be no sound sexuality.’ (Ratzka 1998, in Bahner 2019:41) For example, as part of this prerequisite, personal assistants and nurses are essential as they provide assistance to live independently, e.g., help with eating, dressing, and personal hygiene. Studies by Earl (1999 & 2001) show that although crucial in the indirect facilitation of sex, nurses and personal assistants express disgust to patients, do not know how to deal with a patients’ sexuality, and prefer to avoid the topic altogether. Due to the stigmas related to sexuality and disability, it is more difficult for women to advocate for the assistance they need to engage in sexual activity (Bahner, 2012). Other examples are lack of privacy, especially in group home settings, alongside misinformation or absence of specific sexual education (Basson, 1998:360; Parker & Yau, 2012).

Challenges in experiencing sexuality

Moin et al. (2009) found that sexual satisfaction was a significant indicator of overall life satisfaction in non-disabled women and women with a disability. This study showed that regardless of disability, women have the same desires and needs. However, results from women living with a disability were significantly lower regarding sexual satisfaction, body image, and sexual self-esteem than non-disabled women. A quantitative study by McCabe and Taleporos (2003) reported similar results: people with more severe impairments had higher levels of sexual depression and lower levels of sexual self-esteem and satisfaction as well as less frequent sexual activity compared to non-disabled people. There are multiple challenges women with disabilities face to seek and experience a satisfying sex life, which explains this lower sexual satisfaction. Foley created a sexual dysfunction scale, initially used in quantitative research among women living with Multiple Sclerosis consisting of three-level, primary, secondary, and tertiary (Sanders et al. 2000). This module is a useful framework to understand the impact of disability on sexuality (Esmail et al. 2007:165). Depending on the type, severity, visibility, and onset of disability, women experience dysfunction in these levels. The primary dysfunction involves changes in sexual functioning directly related to disability: changes in genital sensations, pain, lubrication, and orgasms. Disability can directly affect the (psychological) sexual response, such as loss of sensation (in SCI, for example), limited

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mobility, or spasms (Basson, 1998: 360; Verhoef et al. 2005:982). The secondary dysfunction relates indirectly to disability: bowel or bladder dysfunction, pain, loss of energy, or side-effects from medication, which all can limit sexual motivation (Basson, 1998: 360). Lastly, tertiary dysfunction refers to psychological and cultural aspects, including self and body image, worries and communication with partners, fear of rejection, etc. (Esmail et al., 2007: 165). Cultural ideas around body image, attractiveness, and self-esteem can hinder women’s sexual experiences (Bregman, 1978: 89; De Boer, 2015: 66; Verhoef et al., 2005: 982). These levels are interlinked, and often the two first categories co-create and influence the third. For example, Verhoef et al. (2005) show that only 52% of the participants with spina bifida was satisfied with their current sex live. In this same study, women with spina bifida, mentioned that, the biggest challenge to finding a partner was lack of self-confidence, followed by incontinence (982). The mostly quantitative studies in this paragraph show that physical impairment alters and reduces sexual experience and expression; however it is essential to recognize that sexuality needs to be understood beyond dysfunctionality (Bahner, 2019: 28).

Positive sexual experiences

‘We must make more space to explore pleasure, well-being, and the positive sides of sexuality’

(Jolly, 2010: 227).

Despite challenges in many aspects, multiple studies have shown that people living with disabilities have the same range of sexual needs, expressions, and desires non-disabled people have (Erickson, 2007: 43; Milligan & Neufeldt, 2000; Taleporos & McCabe, 2001). Although Foley’s scale offers a systematic way to evaluate sexual dysfunction, it does not fully reflect people's full sexual experience (Karlen, 2002: 191). Quantitative measurements give some indication of women’s sexuality; however, this methodology fails to collect subjective experience of sexuality (Parker & Yau, 2012: 16). It is important to note that sexuality is an integral part of life and that sexuality is constructed differently for each woman (Koch 2002: 144). Some more qualitative studies report more nuanced and positive results regarding sexuality and disability. Bregman (1978) found that despite what people might expect, sexual encounters of women with SCI did not differ as much as those of non-disabled women, and the difference should not be overestimated (192). Although for women with SCI, there are some adjustments in sexual activities related to changes in bodily sensations and bladder control, women were most often sexually satisfied. This study also showed that some women with SCI experience sexual pleasure by stimulating ear, mouth, or other non-paralyzed parts of the body (Bregman, 1978: 89). Women living with disabilities also report satisfying psychological aspects of romantic relationships, reading erotic material together, or verbalizing erotic stories (Ibid: 89). These psychological aspects were also found by Esmail et

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al. (2007). They reported that couples of whom one suffers from (MS) that despite their sexual relationship might suffer from the illness, their marital relationship is enhanced (166). Two different qualitative studies amongst women with SCI confirm this as well. The women’s condition had a positive effect on communication, sexual creativity, and exploration (Parker & Yau, 2012; Tepper et al., 2001). Lastly, sexuality is not exclusively experienced with a partner. Both masturbation and sexual imagination are great aspects of women’s sexual satisfaction. Fraley et al. (2007) mention that fantasizing ‘is another way of transcending the physical limitations of disability and expressing sexual feelings’ (21). They also report that the use of sex toys such as vibrators or dildos are other essential tools to experience sexual pleasure for people living with disabilities (ibid).

Although there is a broad range of literature, there is a clear gap in the thick description and knowledge of the individual lived sexual and intimate experiences of women living with physical disabilities (Bahner, 2012: 353, Tepper 2000). This study aims to fill some gaps in understanding the experience of sexual pleasure and intimacy of women in the Dutch context. In this first chapter, I have highlighted some important literature about sexuality and disability. In the following chapter, I will introduce the theoretical lenses I apply in this thesis. In chapter three, methodology, I discuss data collection, ethics and positionality. In the three subsequent chapters, I will discuss my empirical data. Chapter four I will show the structural oppression women face with the use of the political body. In chapter five, I will expand upon these oppressions with the social body and show how women find romantic and sexual partners despite stigmas. In chapter six, I will discuss how women experience intimacy and sexuality through the idea of the embodied self. In the last chapter, I will conclude my findings.

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2. Theory

‘We need to see the interplay of individual, social and political dimensions and how they impact upon disabled people’s sexual rights’ (Bahner, 2019: 28)

Scheper-Hughes and Lock’s influential paper (1987) problematizes the medicalized perception of the body and associated separation between mind and body. The ‘three bodies’ offer three different perspectives. The is the individual, the body-self, the phenomenally experienced individual body. The second is the social body in relation to culture, nature, and society. The third body, the body-politic, functions as a unit of political and social control. These ‘bodies’ refer to three different theoretical approaches (Scheper-Hughes & Lock, 1987: 8) and inspire the analysis of my empirical data. In this chapter, I will first examine the social and political body, using the social model of disability and feminist disability theory, which both offer insights into how systematic forms of oppression shape women’s lives. I will then discuss the third body, the body-self, a feminist phenomenological approach that provides an in-depth individual perspective particularly related to sexuality. Social model of disability

Mike Oliver developed the social model of disability in a reaction to the dominance of the medical view of disability. This model has been a dominant theory in disability studies since it was first published in 1983 (Blume & Hiddinga, 2010: 229; Shakespeare, 2006: 197). The social model of disability highlights how people are not limited solely by their impairments, ‘but by the disabling barriers [people with disabilities] face in society.’ (Oliver, 2013: 1024). For example, a medical model would suggest a woman in a wheelchair has to seek therapy to improve her ability to walk, while from the social model perspective one would argue that buildings should be more wheelchair accessible with lifts and ramps (Hoppe et al., 2011: 17). Within the social model, a distinction is made between a disability, which is created by social exclusion and impairment based on physical limitations (Shakespeare, 2006: 197). From this perspective, a disability only becomes disabling in relation to social and economic structures, which systematically exclude people living with a disability from fully partaking in society, as well as social practices and cultural attitudes towards people living with disability e.g. stigma and stereotypes (Terzi, 2004: 141).

There are, however, multiple arguments criticizing this social model – firstly, if disability was solely socially constructed, it would disappear with empowerment. This is unlikely and leads to the second point: the body is left out of consideration in this model (Blume & Hiddinga, 2010; Hoppe at al., 2011). Shakespeare argues that this theoretical model has the danger of victimizing people living with a disability. It starts from the assumption that people with a

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disability are oppressed by default, leaving little room for the possibility that people with disabilities do not feel oppressed (Shakespeare, 2006: 195). In reaction to this criticism, Oliver reminds that the social model shouldn’t be seen as an ‘all-encompassing frame’ to understand disability, but merely a frame which can partly help to understand and explain the impact disabilities (can) have on people’s lives (Oliver, 2013: 1024). Instead of abandoning the model, it should be ‘refined and extended to accommodate critique’, as Blume & Hiddinga (2010: 225) have suggested. These authors argue that when looking at disability, the social model helps to understand how physical impairments can become disabling through the interaction with a non-disabled world. This is also the approach I will follow in this thesis. Concerning sexuality, the social model is also applied, this model highlights social barriers preventing sexual expression and sexual activity of women living with a disability, such as the narrow cultural meaning of sexual attractiveness and limited comprehensive sex education (Ballan, 2008: 198). Together with the feminist disability theory explained in the next section, the social model offers an understand of the political and social bodies - a perspective on the contexts in which women’s stories occur.

Feminist disability theory

Like the social model, feminist disability theory is a macro-political lens that I use in this research to analyze power relations and identity formation in the context of sexual pleasure and intimacy. The social model investigates the relationship between body impairment and a non-disabled society and highlights how social structures are the locus of oppression rather than the body. Feminism adds a gendered lens, which allows me to analyze the particular power relations at the axis of gender and disability. Feminist disability studies, a form of intersectional feminism, integrate disability ‘as a category of analysis and a system of representation that deepens, expands and challenges feminist theory’ (Garland-Thomson, 2002: 3). Using this feminist disability framework allows me to highlight common concerns about different societal factors that (may) limit an agentic (sex) life (Barron, 2001: 433). To understand women’s lives in this thesis it is crucial to contextualize the patriarchal ableist society and analyze the interaction between disability and society, gender and society, and gender and disability, as these create a different reality. Identity categories are not separate or opposing, but rather interrelate, intensify, and allow us to problematize what ‘femininity’ entails (Garland-Thomson, 2002). Feminist disability theory shows how the female body and the disabled body are viewed as anomalous and inferior compared to male bodies (Thomson, 1997). This theoretical lens can highlight how due to dominant normative sexual script and associated stereotypical ideas on gender and physical impairment, women have difficulties taking ownership of their sexuality (Esmail et al., 2007).

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However, feminism as a theoretical lens as its limitations, especially concerning sexuality studies due to the focus on social construction and the neglect of embodied experience. As Al-Saji argues that the body is often seen as an empty slate upon which axes of the social construction - gender, race, sexuality, etc. - are merely inscribed (2010: 32). Not only is the body seen as an empty slate, according to Spronk, feminism also neglects the study of erotic practices and experiences due to the large focuses on identity formation and power relations (2014: 4). Lastly, Shildrick mentioned that the feminist lens could overlook the different embodied experiences in physicality and social contexts (2005: 343).

Following Scheper-Hughes & Lock, I will look at the political and social body via both the social model and feminist disability theory. These bodies allow me to emphasize a political and social perspective on disability, a lens into how different parts of women’s identity shape their (sexual) experiences. These two theoretical lenses give insight and function as a foundation for the last body, the embodied self, using feminist phenomenology as a theoretical lens.

Feminist Phenomenology

‘[..] to acknowledge the centrality of embodiment to the experience of life with a disability’

(Blume & Hiddinga 2010: 233)

In phenomenology, the Cartesian binary of body and mind is abandoned. ‘We simultaneously experience our bodies and experience through our bodies’ (Blume & Hiddinga 2010: 230). Phenomenology allows me to understand and describe phenomena from the perspective of those who experience it (Toombs, 1995). The phenomenological approach emphasizes the dialectic and dynamic relationship between the world and the body and the relationship between the material body and the lived one. This is important because for people living with a disability, the material body, and the subjective, lived body can be experienced quite differently (Toombs, 1995: 10). For example, some respondents using a wheelchair - in the current study - mention their erotic fantasies of standing while having sex. These fantasies are experienced in the subjective body. However, the impaired body cannot act upon these fantasies in the material body. A phenomenological approach limits the assumptions about the pre-existing cultural context, positionality in society and social norms (Al-Saji, 2010: 32). In this thesis, phenomenology centralizes women’s experiences, after which they can be used to understand oppressive ideologies and structures. ‘Bodily experience can be the ground of our awareness of social structures of oppression and the site where complicity, subversion or resistance are enacted’ (Al-Saji, 2010: 33). In this thesis, I will show and argue that resistance is especially important for the interviewed women. Although oppression is part of their

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experience, I am also using the phenomenological perspective to analyze and show the (positive) experiences of sexuality and intimacy and how these can empower the women I spoke with. With the use of feminist phenomenology, I show how the body is the central locus of empowerment through sexuality. Related to sexuality, attention to the body is crucial as it is the ‘site where regimes of power inscribe themselves’ and a point where knowledge is created (Spronk, 2014: 6,7). It is essential to recognize, as Spronk argues, that the body is agentic, active in creating and reenacting meanings of sex. Pleasure is constructed in the mind, memory, imagination, and perception, all of which play essential roles in satisfying experiences (Hull, 2008: 137). Bodies can be passive and agentic simultaneously, receiving sensations, and creating them. Phenomenology is useful when studying sexual pleasure, as this is a complex and personal experience. For instance, embodying pleasure, via masturbation, can feel very empowering as ‘the body as an actor realizes erotic meaning’ (Spronk, 2014: 7).

Feminist disability theory and the social model of disability expand the analysis and interpretation of the data by showing the multipolarity, particularity, and dynamic nature of the cultural and social world in which the interviewees’ body is embedded. It contextualizes, socializes, and politicizes lived experiences in a broader power system (Fisher, 2010: 94). ‘Bodily experience can be the ground of our awareness of social structures of oppression and the site where complicity, subversion or resistance are enacted.’ (Al-Saji, 2010: 33). Combining a feminist disability theory and the social model with phenomenology allows a complex understanding of the reciprocity of social position and embodiment (Al-Saji, 2010: 18). Phenomenology helps to understand the particular heterogeneity of the lived bodily experience. At the same time, feminism adds an essential layer of analysis to understand the broader political gendered context which shapes individual experiences. These frameworks combined offer a look beyond the axis of inequality, while still highlighting common forms of oppression and how they are enacted on different levels.

In my thesis, the ‘three bodies’ of Scheper-Hughes and Lock will each guide one of the three empirical chapters in reversed order: political, social, and lastly personal, embodied. Using the ‘three bodies’ as a structure of analysis, I investigate the ‘bodies’ separately, after which I can show how they are interrelated. I will do so by answering the research question: How can the experiences of intimacy and sexual pleasure of women living with physical disabilities living in the Netherlands be understood through Schepers-Hughes and Locks' notion of the three bodies; individual, social and political body political?

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3. Setting and Methods

The Dutch Context

In the Netherlands, roughly 1,6 million adults live with a physical disability (Vereniging Gehandicaptenzorg Nederland, 2019). Dutch Government offers a broad range of social services to people depending on the type and severity of the disability. These services can include adjusted housing, personal assistance, wheelchairs, other aids, and welfare and transportation. (“Handicap & chronische ziekte (hoe is de zorg geregeld?),” 2019). Although there are various services for people living with disabilities, they still face different logistical, economic, and social challenges to participate in Dutch society fully. The Convention on the Rights of Persons with Disabilities (CRPD) was adopted by the UN on 13 December 2006. However, it took the Netherlands another ten years before it ratified this convention (Bahner, 2019: 32; Ministerie van Algemene Zaken, 2016). There is little political interest by the current right-wing government parties to speed up the implementation of the convention.3

This convention is a good starting point, but there is no mention of the importance of sexual pleasure and enjoyment (Bahner, 2019: 29; United Nations, 2006). The topic of sexuality and disability has not reached the agenda, either on the UN or national political levels. The only mention of sexuality was back in 2016 with a motion proposed, which requested the government to increase efforts in ensuring sexual and reproductive health and reducing taboo regarding sexual experience in collaboration with NGOs and healthcare providers (Plenaire verslagen, 2016). Although the motion passed, there has been little implementation. In general, the Netherlands - compared to other countries (UK, Sweden, and Australia) - is rather late in developing disability policy and has a smaller disability movement (Bahner 2019: 34 & 39). Although there are multiple sex care organizations in the Netherlands, there are no significant projects around sexuality and mobility impairments or a women’s disability organization (Ibid: 34 & 39). Some Dutch NGOs and feminist activists such as Xandra Kosters and Jaqueline Kool are dedicated to implementing the UN resolution in the Netherlands and including sexual pleasure (Xandra Koster, n.d.).

3 19 December 2019, during the house of representative’s yearly debate on the implementation

of the CRPD, motions proposed by the opposition to improve this implementation were rejected by government parties. (Plenaire vergadering, 2019). The resolutions aimed to check current Dutch laws with the UN resolution, requested more accessibility, inclusion, and measures to regulate income and work, but failed to convince the government.

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Research methodology and data analysis

This anthropological thesis is based mainly on in-depth interviews with women living with disabilities and interviews with sex care workers and NGOs. There are practical and ethical issues to consider when directly studying sex, so I relied on the retelling of sexual experiences via interviews as my primary sources of data collection (Bosman et al., 2019: 412). To get an in-depth understanding of ‘the three bodies,’ it was essential to conduct semi-structured interviews in which women addressed challenges and felt free to share intimate experiences at their own pace. The interviews were conducted in the period between February 14 to May 11, 2020. From mid-March, all interviews were conducted online due to the COVID19 restrictions in the Netherlands. In this chapter, I am expanding on the methods used in this thesis, ethical concerns, and positionality.

Process of recruiting respondents

My research is not linked to an organization, and I am not part of a disability network. This is why I recruited respondents mainly via social media with a digital poster (see appendix 3). At the start of my fieldwork, I emailed over 20 Dutch organizations working with people who live with disabilities. Five organizations replied to me and agreed to share my recruitment poster on their social media. The first half of the respondents were recruited this way; about ten women who read the poster emailed me to participate in the research. My respondent recruitment advanced through snowball sampling, as original respondents referred me to their friends and neighbors, which resulted in an additional seven respondents. The remaining five respondents, activists, and NGOs I contacted via their websites. Lastly, during my preliminary research (late 2019), Tika Stardust, a sex worker, and activist referred me to two male sex care workers and two sex care organizations who were willing to be interviewed.

Voluntary and willing participation

In total, I conducted twenty-two interviews of which seventeen were with women4 with

disabilities. All respondents were between the ages of 25 and 73 and lived throughout the Netherlands. Nine respondents lived with a congenital disability, while the other eight acquired their disability later in life. About half the respondents were wheelchair users; other women had chronic conditions and audio and visual handicaps. Due to the scope of research and potential vulnerability, I did decide to exclude minors and people with cognitive disabilities.

4 Three of the interviews were with women and their partners together.

The other five interviews were with sex carers and sex care organizations. Unfortunately, I left the topic of sex care out as I couldn’t do justice to this exciting and multifaceted topic within the scope of this thesis.

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The disability community is heterogeneous, and people with mental disabilities tend to have different challenges than people with physical disabilities (Shakespeare, 2000: 162).

Before the start of the fieldwork, I anticipated respondent recruitment to be my main challenge. However, within the first two weeks, surprisingly, many were willing and excited to participate. One of the respondents, Eve, emailed me: ‘Dear Joy, first of all, this research is needed! My partner and I are experiencing this every day’. This feedback was very encouraging, as it showed the relevance of the research topic. Although this method has a self-selecting bias, it also ensured that the respondents are generally intrinsically motivated and participate voluntarily, and respondents self-identified as living with a disability.

Limitations of self-selecting bias

The self-selecting bias also affects the representativeness of the research. Due to the size of the study, I cannot generalize beyond the informants, nor is it representative for women living with a disability in general (Parker & Yua, 2012). Not only are people living with disabilities, an incredibly heterogeneous group, but I also had limited diversity in my respondents. Although my sample consisted of a great variety of age, geographical diversity (within the Netherlands), and a range of disabilities, my respondents were mainly heterosexual, white, and entirely cis-gendered. Future research should include women from minority backgrounds and the LGBTQ+ community, as there is limited research on these people’s experiences (Fraley et al. 2007; Parker & Yau 2012: 25). Secondly, most women I spoke with were very activist and knowledgeable on the topic. Many women wrote blogs, books, made podcasts, or regularly talked about sexuality and intimacy in their work. Due to the self-selecting bias, respondents may be more interested and concerned about sexuality compared to others (Taleporos & McCabe 2001: 146). Thus, this thesis, I do not aim to provide an exhaustive overview of experiences of sex and intimacy while living with a disability. By collecting the stories of these women, I want to give an in-depth picture of what a (sex) life with a disability can look like and offer some counter-narratives to a general misunderstanding, ignorance, and taboos with regards to women’s sexuality.

Data collection and analysis

For data collection, I used semi-structured interviews combined with the structure of a (sexual) life-history interviews. The life-history interview technique is a valuable research tool that enables an in-depth and rich understanding of people’s identities and experiences (Lim, 2011: 1). The structure of the life-history interviews also allowed me to build conversations sensitively, from early childhood to more recent times and intimate topics, such as falling in love, heartbreak, masturbation, and fantasies (see appendix 1 for interview topic list). With the

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flexibility of semi-structured interviews, I intended to provide the space for women themselves to tell stories significant and meaningful to them, and left room for emerging themes which I had not included in my interview guide.The interviews lasted mostly around two hours, with a range of one up to three hours. Five interviews were conducted face to face at a place of the respondent’s choosing, mainly their homes. The remaining interviews were conducted online due to COVID-19 restrictions. I used different software programs, depending on what the respondents were most comfortable with: Whatsapp video call, Skype, Zoom, Google hangout, Facebook. With the respondents’ consent, I voice-recorded all the interviews with my phone or laptop to later transcribe the conversations. All interviews were conducted and transcribed in Dutch. For coding the interviews, I used Atlas.Ti software.

At the start of the data processing and analyses, I fully transcribed all interviews and provided the respondents with a digital copy of the transcript. Receiving the transcript gave respondents a chance to retract participation or provide additional information. One woman edited the transcript, while some others sent me additional thoughts over email or requested me to withdraw some sections. In my data analysis, I have drawn from Grounded Theory to analyze my data. This approach allowed me to conceptualize social patterns and continually compare the initial findings and data interpretations (Green & Thorogood, 2018: 183). This theory enabled me to work inductively and deductively simultaneously and ground my analysis firmly in my research. While coding, I found the most common themes, which I then linked to different theoretical perspectives. Data analyses and writing were iterative processes in which there was continuous interaction between understanding the raw data and relating it to and elaborating on existing literature and theories (Strauss & Corbin, 1994: 273).

The impact of COVID-19

On March 15, 2020, three weeks into my fieldwork period, the Dutch Cabinet installed an ‘Intelligent Lockdown’ in reaction to the COVID-19 pandemic (Rottinghuis, 2020). The first few weeks were stressful and frankly, scary, which resulted in a temporary pause in my fieldwork. However, after the first two weeks, I reconnected with my respondents and, after some hesitation, shifted to online interviews. The pandemic impacted my personal well-being and my research, but despite some delay and technical challenges, my data collection went well. All women who agreed on a face to face interview before the onset of the pandemic later agreed to an online interview.

Despite the online barrier and my personal hesitation regarding online interviewing, my impression is that it was a successful method. Some issues might have had a negative impact on the richness of my data, such as a bad connection, limited time for rapport building, and

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limited visual cues, but - overall - I think they had a minor impact. For example, during a video call, I couldn’t see someone’s full body, so it was difficult to understand to grasp people’s disabilities. Thus, I had to ask questions I could otherwise presume and contextualize, such as wheelchair use or assisted living. The ambiance during the interviews was - in my opinion - good because the women shared many stories, and we shared moments of laughter. However, I do notice that maintaining a rapport over a longer time is hard, as we only had a one-off conversation, and the online component made it less personal than a visit to someone’s house. There were also some positive aspects of continuing fieldwork during this pandemic time. First of all, it made my fieldwork much more time-efficient. It reduced my travel time to zero and also cut the length of interviews without impacting the quality of the conversations: the online communication tended to be more ‘to the point,’ and rapport building was more purposeful. The shared circumstances of being in a crisis gave an instant topic of conversation and a way to build rapport. Furthermore, my partner - and fellow master student - was stuck in South Africa for some time. By sharing about my difficulties, it helped me to start conversations with the respondents, as many were going through similar problems.

Ethical considerations

Informed consent, anonymity and data protection

The topics of sex and intimacy often are considered to be private, personal, and sensitive. Thus, I paid extra attention to safeguard ethical concerns such as confidentiality and anonymity during my fieldwork and writing process. I obtained informed consent via a written consent form (see appendix 2). For the online interviews, I sent a digital copy via email. This form states the purpose of the research: that I anonymize names and other sensitive identity markers as well as how data is stored and published. In this form, I also asked the respondent’s permission for participation in my research and the use of quotations in my UvA publication. From the start of my data collection and analysis, I used the respondents’ chosen aliases and changed other personal details to ensure anonymity. To ensure confidentiality, in line with the UvA general data protection regulation (GDPR) data management guidelines (de Kok, 2020), I stored voice recordings and alias codes in separate folders on my UvA one Cloud, which has a two-step authenticator. I was the only one accessing the raw data, and I will remove these when the thesis and associated projects are completed. For convenience, communication with respondents occurred over WhatsApp, Facebook, and Gmail, for which I regularly refresh passwords.

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Not doing harm

The theme of this thesis is sensitive, and throughout my research, I paid attention to potential distress respondents may have felt when sharing too much. This distress can be related to, for example, the onset of disability, traumatic events, or feeling that they lose agency over their story after the interview. In multiple ways, I attempted to help women remain feeling safe and comfortable. As a first step, I prepared the interviews properly: reading the respondents’ own material (blog, websites, or books, e.g.). As an introduction, I shared some information about myself and how I felt (nervous about the interview, stressed because of COVID-19) as a way to establish a rapport and create a trustworthy and friendly atmosphere. Besides these preparations, there were two main ways I reduced the risk of harming my respondents.

Firstly, in the introduction of the conversation, I explained the semi-structured nature of the interview, in which women could skip topics or stop the interview at any point. As expected, there were moments in which women became somewhat emotional, and in some interviews, women shared stories about sexual and domestic abuse. However, one realization was that this is not necessarily something problematic or to be avoided. One respondent, Stella, told me: “It is not that I did not process it, but it still gets me sometimes, and that’s okay.” This remark indeed made me realize that emotions during interviews can be okay, provided respondents are not in direct danger (physically or emotionally) to themselves or others, i.e., suicidal thoughts. Women sometimes mentioned that they had or have a therapist, thus referring them to a mental healthcare professional was not needed, in my opinion.

Secondly, I made sure to email respondents a full transcript of the interview. Receiving the transcript gave women the option to read and suggest edits/correct misunderstandings. This made the respondents more comfortable and willing to share: Iris told me, “ooh, if I later feel that I shared too much, I will check the transcript, and I will email you about it.” Sending the transcript was also a chance for me to check up and ask how the respondents were doing. In general, they were doing well. One woman called me and mentioned that our conversation sparked new activism and interest: she emailed a talk show to ask if she could speak about the topic of disability and sexuality. The interviews also impacted me – it made me reflect on my privileges and my relationship with my partner and my own body. I made sure to check in with my support network to debrief and recuperate after an interview. During the fieldwork, I paced the interviews out and made sure to take enough room to reflect and clear my head before conducting the next interview.

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Positionality

Reflecting on my positionality and its impact was an important point throughout my research and writing. Besides my academic interest in the topic of sex, as a (sexual health) educator and a clinical psychology student, I have practical experiences discussing intimate topics related to intimacy and sexual experiences. My positionality - as an activistic non-disabled cis-woman – has shaped this research in many ways. In this thesis, I aim to centralize women’s voices and share their (sexual, intimate) experience and - where relevant for them - related to their disability. I do want to problematize my position as a non-disabled woman and recognize that my understanding and knowledge was – and always will be in some way - limited. Especially at the beginning of my fieldwork, I asked for respondents' feedback and suggestions on an interview-style, questions, and wording to improve my data collections and sensitivity around the topic. However, I am writing from an etic perspective, retelling stories I haven't experienced myself. It has been essential to remain vigilant and limit generalizations and simplifications throughout my research and writing to avoid alienation and disempowerment (Morris, 2014: 15). I did my best to write in a matter that does justice to the complexity of women’s lives and identities.

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4. The Political body: Being sexual despite stigmas and restrictions

In this first empirical chapter, I will demonstrate how women and ‘their political body’ are affected in their lives - and sex lives - by the stigmatizing views, restrictions, and obstacles in a non-disabled space. Existing stigmas interact and create structural inequalities that limit women’s sex lives. The vast majority of women I interviewed wanted to be recognized as sexual beings – I will expand upon how and in which areas they perceive it as lacking. Firstly, I will expand on the stigmas many women face related to sexuality. In the second part of this chapter, I will highlight some of the most prominent areas in which these stigmas are created, perpetuated. Lastly, I will discuss the indirect impact disability has on women and how this impacts their sex lives and difficulties advocating for it.

Stigmas – Infantilization and asexuality

‘I’m mostly disturbed by others being disturbed by the disability and forgetting to see me.’ (Barron 1997: 228)

Similar to the literature on stigmas mentioned in the first chapter, the women in this study also discussed the stigmas of asexuality and infantilization during the interviews.

Roos – early thirties, sees about 5%: “They see a stick and a blind woman, that is their first judgment. They don’t see a beautiful woman, a spontaneous woman, a cheerful woman, an ugly, fat, or skinny woman. They see a blind woman, and that’s how you enter a room. You need to be very good to turn that stigma around. It is not that I am ashamed of being partially sighted, not at all! I am ashamed of the stereotype of blind and partially sighted people: nerdy, doltish with no style.”

Many women 5 have encountered moments where they were treated like a child, especially by

strangers. Crawford and Ostrove (2003) mentioned that the infantilizing behavior of non-disabled people continues due to the prevailing assumptions that physical disability coincides with a cognitive disability (186). Roos also shares that she has experienced these assumptions as people often offer her help while she doesn’t need nor asks for it. Once at a train station, waiting for her order at a fast-food shop, more than five people approached her to help:

5 It is important to note that stigmas women face are not the same across all interviewed

women; varying according to the severity, visibility, and onset of the disability women face different forms of inequalities.

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“Yes, very sweet but also annoying. People think you are pathetic and vulnerable, like a baby. They touch me as if I am cuddly. You also have people who approach me in a really high pitch childlike voice: ‘HELLOO how are you? CAN-I-HELP-YOU?’ I think to myself uggh! I reply with ‘SO-sweet-YOU-ASK-ME!’ Because then people realize how insanely they approach me.”

The childlike stigma is often juxtaposed with how women feel and want to be seen: a fully functioning, independent woman. Aphrodite – mid-twenties, wheelchair user, spastic cerebral palsy – told me:

“If you wear a nice dress with high heels, then they look twice. I don’t have that. Even if I look super sexy, and I know I am gorgeous, nobody looks at me; they look at me as if I am cute and adorable. Adorable? I look like a million bucks, f*ck off with your cuteness!”

Veroni – mid forties, bedbound, complex regional pain syndrome – even mentions that the stereotype is not only related to childlikeness, and helplessness but also stigma related to beauty. Veroni: “People say stuff like ‘ooh it is such a shame that a person who looks like you has a disability as if only ugly people can become disabled!” The idea of being helpless, dependent, and adorable doesn’t leave room for the idea that the women I spoke with can also be sexual, independent people. Which leads to the next stigma: people with disabilities are asexual.

Stigma of asexuality

Stella, mid-seventies: “I tell people: listen, I might have something with my leg, but there is nothing wrong with my sensations or mind.”

Another misconception is that people with disabilities are uninterested or unable to engage in any type of sexual activity (East 2014: 336). This stigma of asexuality came up alongside the stigma of infantilization during the interviews. Many of my respondents shared that while growing up, there was an expectation that they would remain single. Sonja – mid-thirties spina bifida: “obviously, my parents wished for me to find someone, but I think their expectation was I would remain alone, and if I would find someone, it would be someone with a handicap.” The stereotype of asexuality exists; however, women also shared frustration because some people exoticized them. Respondents often got the question, ‘but how do you have sex?’ Many people do not expect the respondents to engage in sex and are often intrigued by the idea of sex and disability. Roos said: “people don’t say ‘woo, I am dating a blind woman, soo hot!’ That’s a

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strange sentence. When you tell people you are dating a blind woman, people immediately think ‘ooh, how does that work?’”. Veroni, tells me she hates that healthy people believe people with a disability do not have sex. But she also hates “the whole hype around ‘how do they have sex?’ As if you are peeking at monkeys.” Fetishizing women with a disability did not come up extensively. Still, some women mentioned that during their online dating, they encountered some ‘devotees’ – mainly men who have a sexual fetish for women (or men) with a physical disability.6

Although stigmas have a negative effect on women’s (sex) lives, in the next section I discuss some of the beneficial aspects of the existing stigma around disability which limited gender related problems.

Intersecting stigmas: gender and disability

Jacqueline – end fifties, wheelchair user, progressive neuromuscular disorder – mentions how stigmatizing views regarding disability in some way can in somewhat protect from the stigma women face. The sociosexual script of women, especially in a more religious community like the one she grew up in, is one filled with shame and angst. However, due to stigma of asexuality, Jacqueline was never exposed to this compared to her sisters. She was never included in conversations about sex and marriage and was indirectly told that she will not grow up to be a sexual person.

“Implicitly I received the message ‘you go do other nice things, because this [sex and relationships] is not for you. Don’t think you will find a man.’ But so, when sexuality did come in my life, in hindsight I realized I had very little hang-ups. Because I was never included in the conversation, I also had no notion about sex. I didn’t grow up with the idea: ‘ooh no, [sex] is inappropriate, it is disgusting.’ While the generation and the place I grew up sent that message to others. When sexuality entered my life, I felt very free, it is the mirror of growing up sexless.”

The stigma of asexual Jaqueline was brought up with, protected her to a large extent against the negative stigma other women and girls around her had to deal with. In this example, the intersection of gender and disability, the stigma in a sense protected Jaqueline from the fear around sex other women in her surroundings felt. Because regardless of disability, sexuality

6 Devoteeism is a complex and debated topic among the (feminist) disability community and

has become a more prominent topic due to internet dating. Some regard devotees as sickening fetishists while other welcome devoteeism as a sexual way in which disabled bodies are desired (Saltes 2013: 106).

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is a stigmatized topic in her environment, and non-disabled people, in particular women, are very much affected by problematic sociosexual scripts. Roos – early thirties partially sighted – also shared an example that shows clearly how her disability quite literally protected her from what many women experience and turns into stigma of asexuality to her advantage. During her internship working in an unsafe neighborhood, she always brought her stick: “my stick was my savior, nobody would talk to me, there was no hissing or catcalling. It was such a big difference! When I walk with my stick, I don’t suspect to ever get a flirt.”

There are many areas in society where the stigmas of asexuality and infantilization of whom continue, despite their desire to be recognized as independent sexual beings, which they most often are (Parker & Yau, 2012). In the next section I will discuss some of the most prominent areas in which these stigmas of asexuality and infantilization are present. I argue that women are sexual limited by structural logistical factors that co-exist and simultaneously create and are created by these stigmas.

‘He has to take off the white coat’ – talking sex and pleasure with doctors

‘As long as women with physical disabilities are viewed as deviating from the sexual norm solely on the basis of disability, they will continue to be ignored by the medical and social services emerging to promote women's health and sexual wellness’ (Nosek 1996: 179)

The stigma of asexuality is also a medical stereotype (Nosek 1996: 166). Despite the frequent interaction, most women have with healthcare professionals; sexual pleasure is rarely discussed. As described in the literature review, respondents’ disability often alters their sexual functioning. Still, according to my respondents, discussing the impact of disability on sexuality with a healthcare professional happened seldom. Only few women could recall a conversation with their doctor, which was most often short and not constructive. My respondents’ experiences are in line with a Dutch study by Wiegerink et al. (2011) which found that for 90% of adolescents with Cerebral Palsy (N= 74) sexuality was not discussed during their rehabilitation treatment.

Depending on the type of disability, there are many instances where sexuality and pleasure is hampered. For example, pain medication such as oxycodone can lower or completely eliminate sexual desire as it suppresses the nervous system (Ajo et al., 2016). As Britt – end twenties, wheelchair user, neuromuscular disease – said: “At one point I took a pill at 5 am and at 10 am I really couldn’t have sex. I thought: ‘I will never take oxycodone again!’” Many women are under treatment with specialized doctors who focus only on the particular medical/physical problem, not on the overall impact of a disability. Roos early thirties – visits

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many specialists and they all prescribe her different medication, “and I have to tell my doctor ‘no, that doesn’t go well together’”. Similar to Roos’ experience, a qualitative study by Barron (1997) shows that doctors do not always take into account the knowledge and competence women themselves have about their bodies.

Due to specialization and fragmentation of the healthcare system, the patient as a person, and their experiences are lost. Roos: “they all look at a tiny piece of me and don’t look beyond that. That is also the case with sex; it is not their specialism. So, then it doesn’t exist?”. The specialization fragments Roos’s body, and causes her sexual pleasure to disappear between the cracks of different medical disciplines. The functionality of different bodily systems is prioritized over the personal, emotional and psychological experience of sex. Similarly, Parker and Yau (2012) conclude that sexual pleasure is not sufficiently addressed in doctor’s offices and rehabilitation centers (22). It is clear that sexuality is important not only for physical health but also for psychological well-being (Taleporos & McCabe, 2002: 182). From the interviews it became clear that women felt that the health care system failed to recognize their needs and experiences. The lack of attention to sexual pleasure, doesn’t assist in improving knowledge about women’s bodies and sexuality, but also ultimately sustains the stigmas around asexuality. Healthcare providers need to provide necessary information regarding sexual health, reproduction, and pleasure (Wiegerink et al., 2011). This is important because it can assist in satisfying sex lives and validates people’s ‘position as a fully capable sexual being in society.’ (East 2014: 346). For example, Janine had a clear picture of how healthcare providers need to take the initiative and pay attention to the setting.

“It will take some time, otherwise you cannot start that conversation. Doctors need to open their mouths and send parents to the hallway, to speak privately with their patients. The setting is so important, it needs to be more intimate. It can be in the same room, but he needs to take off his white coat. That sounds stupid, but that’s the wall they have around them.”

Sexuality education

Conversations about sexuality and pleasure do not only need to happen in the medical field but also in education systems. Sex education should be more inclusive and catered towards specific disabilities. However, East (2014) found that education institutions, health care professionals, and parents put off the responsibility of sex education as ‘someone else’s job,’ resulting in a lack of sexual skills and knowledge (335). Adolescents in her study expressed their frustration with a lack of sex education, according to them, due to the societal stigma around sexuality and disability (ibid: 340). In my interviews, women expressed that they often