Sex Disabil (2012) 30:337–356 DOI 10.1007/s11195-012-9268-2 ORIGINAL PAPER
Legal Rights or Simply Wishes? The Struggle for Sexual Recognition of People with Physical Disabilities Using Personal Assistance in Sweden Julia Bahner
Published online: 10 May 2012 Springer Science+Business Media, LLC 2012
Abstract The purpose of this study is to explore the lived experience of sexuality for people with physical disabilities using formal personal assistance services in Sweden, from their own perspective. This is analyzed in relation to the aims of personal assistance services according to Swedish law, which states that they should be framed in terms of autonomy, integrity and self-determination making it possible to live a good life, on the same terms as non-disabled people. Data were collected through face-to-face interviews with ten assistance users and through observations on an online discussion forum for people with disabilities. The main findings of the study concern participants’ struggle to be recognized as sexual beings in order to be able to live as desired, as well as the different strategies needed to overcome obstacles in sexual expression. Results indicate the need to train personal assistants about handling assistance users’ sexuality and sexual situations. Keywords Physical disability Personal assistance Sexuality The construction of normalcy Social policy Sweden
Introduction The impact of sexuality on our identity and on our general health and well-being, both physically and psychologically, is recognized [1–3]. However, for people with physical disabilities, issues regarding their sexuality are still in many situations silenced and ignored [4, 5]. In spite of increased knowledge in the field, amongst the general public and to a certain extent among professionals, people with physical disabilities are still regarded as asexual and positioned within the heterosexual matrix [6–10]. Hence, despite the fact that the practice of sterilizing people with disabilities in Sweden ended in the 1930s, many people with disabilities are still being met with prejudice and ignorance when trying to discuss or express their sexuality [5, 11–13], which is just another way of delimiting sexual J. Bahner (&) Department of Social Work, Faculty of Social Sciences, University of Gothenburg, P.O. Box 720, S-405 30 Go¨teborg, Sweden e-mail:
[email protected]
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expression for people with disabilities through disciplinary power [14]. It is evident how ableism, body fascism, inaccessibility and inferior economic conditions hinder sexual access and sexual opportunities for people with disabilities [4, 15, 16]. Additionally, as recipients of welfare services and benefits, the lives of people with disabilities ‘‘often intersect at personal and political junctures’’ [17] when legal aspects of services influence the possibility for them to live as they please. One such example where this intersection becomes visible is within state funded personal assistance services. Personal assistance is a state funded legal right in Sweden since the Support and Service for Persons with Functional Impairments Act (Lag om sto¨d och service till visa funktionshindrade, LSS) came into effect in 1994 [18]. The intention, based on independent living ideology, was to make it possible for people with disabilities to be able to live in the community on the same terms as non-disabled people according to the guiding principles of autonomy, integrity and self-determination and, additionally, under good living conditions [19]. Indeed, personal assistance services made it possible for this group of people to gain control over their lives and live more autonomously according to their wants and needs [20–23], however there are still many unresolved issues [24]. One such issue is to what extent the assistance user can demand certain services before breaching the Work Environmental Law (Arbetsmiljo¨lagen) [25] for personal assistants, since this law has the same force as the Support and Service Act [26, 27]. The law states that working conditions must allow workers to remain physically and psychologically well (ibid), i.e. if an assistant experiences an action to be in opposition with personal values and beliefs, it should be acceptable for them to refuse execution of the wanted service [28]. This can be especially delicate concerning sexuality. In the absence of general guidelines, formal requirements regarding qualifications for personal assistants [29], training, supervision or professionalization [21, 30], there is often insecurity about how to deal with assistance users’ sexuality [31]. Personal assistants’ beliefs and moral judgments have been shown to strongly influence, and cause attitudinal barriers in, sexual expression [7, 11, 32, 33]. Therefore, the lack of skilled personal assistants may have a negative impact on the sexual well-being of people with disabilities, an issue that has not been recognized by providers or social policy makers [7]. Even though it is evident how personal lives and sexualities are constructed in and through social policy and practice sexuality and sexual relations is still considered to be within the private realm and thus not for public policy to regulate [34, 35]. This can also be seen in relation to the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which was ratified by Sweden and came into power in 2009. Even though the article 23 covers the right to a sexual life, this aspect has not been implemented in personal assistance services. For example, article 23 states that discrimination should be eliminated in ‘‘all matters relating to marriage, family, parenthood and relationships, on an equal basis with others’’ [36]. However, there seems to be a demand for both knowledge and action concerning these issues from some groups. The Federation of Young Disabled (Fo¨rbundet Unga Ro¨relsehindrade) has recently published a handbook for assistance users and assistants that aims at breaking the taboos and judgmental attitudes surrounding sexuality and personal assistance, as well as giving advice on how to handle situations concerning sexuality [37]. Similar handbooks have been given out in other countries as well, for example Canada [3]. It has been shown how it is taboo to talk about sexuality not only with professionals, parents and other non-disabled people, but also within the disability community where sexuality rights has not been recognized as an equally important issue to fight for as, for example, physical accessibility and the right to adequate housing, education and work
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[3, 13, 37]. In both handbooks communications is discussed as the key for an adequate handling of sexuality in the context of personal assistance. In Sweden, regardless of the right to autonomy, a welfare services recipient can merely wish for certain services, with the final decision being made by the authority [28]. A contrast is for example Denmark, where the Ministry of Social Affairs (Socialministeriet) has issued guidelines on assistance users’ sexuality in practice [38]. In this legal document, it is stated that it is the personnel’s duty to facilitate service users’ sexuality, whether it concerns assistance in order to have sex with a partner, to masturbate or to contact a prostitute (ibid). In Sweden, where the purchase of sexual services is illegal, sexual facilitation has become a complex issue [39]. As personal assistance services are indirectly funded by the state, and the purchase of sexual favors is prohibited, sexual facilitation within personal assistance is interpreted as purchase of sexual services. This logic of thought has therefore paralyzed further discussions on the possibility to include aspects of the assistance users’ sexuality within personal assistance services. It is therefore questionable whether or not the aims of the LSS-law to make it possible for the assistance user to live as independent and good a life ‘‘as anybody else’’ is really possible with respect to sexuality.
Aim and Scope of the Study The aim of this study is threefold, with the personal assistance users’ perspectives in focus. Firstly, their experiences of sexuality and sexual expression are analyzed in relation to sexual normalcy and able-bodied sexual values. Secondly, their experiences of sexuality in relation to personal assistance services are analyzed. Thirdly, sexual agency and strategies for (alternative) sexual expression are analyzed. The study is part of a larger research project studying sexuality issues in relation to formal personal assistance services in Sweden where the experiences of personal assistants and assistance providers are also studied.
Meaning(s) of Sexuality Essential to understanding the theoretical approach that underpins the study, perspectives on how one can understand sexuality is presented. The theory of sexual scripts [40] can be used to explain how societal sexuality discourse(s) influences sexual behavior and interaction with others and why the disabled body is not considered sexual [4, 41]. Sexuality is something we learn about and rehearse throughout our life on cultural, interpersonal and intrapsychic levels through sexual scripts, manuscripts for sexual acts that can be found on explicit and implicit levels [40]. The implicit level can for example be understood in how the body has a central symbolic role in the context of sexuality [14], where the body with disabilities for many non-disabled people entails meanings such as unattractive, non-sexual and non-gendered [13, 42, 43]; in other words, the body with disabilities is non-normative. This might also affect the self-image, identity and feelings of (un)attractiveness of the person with disability [13, 42, 44], an impact on the explicit level. Presenting the body in different ways or even manipulating it to look or behave in a certain manner might be natural for many. However, for a person with physical disability it might be impossible to control the body and its impulses, for example due to spasticity. Being in need of help to control one’s body when eating or showering might be one thing, but getting the same help
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in a sexual situation entails a huge leap for most people [43, 44], showing how the interplay between intrapsychic scripts do not conform to those on the cultural level, where sex is considered to be of the private realm, without involvement of others. Therefore, how we understand the concept of sexuality is imperative when discussing sexual facilitation for people with physical disabilities. Scholars arguing for a higher degree of sexual facilitation [17, 33, 45] can essentially be interpreted as suggesting that sexual release is a basic need as important for a person’s general health and well-being, like the need for sleep or food, and therefore should be taken care of by assistants if the person is unable to do so themselves. However, several studies [42] have shown the opposite and the present study adheres to Shakespeare’s [12] definition, saying that Sex is not that important. It’s not vital to happiness. [—] Most people are not looking for sex itself, they are searching out intimacy, warmth, validation, connection. That is, relationships rather than sex are what counts. Looking at society today, it is evident that some groups’ sexual scripts are normalized and more manifest than others’ [14]. For example the heterosexual, non-disabled, monogamous couple, belonging to the same generation, having ‘‘vanilla’’ sex in their home [46] is still considered the norm, and have become what Foucault [14] called the ‘‘truth’’ about sexuality and what Garland-Thomson [47] calls the Normate that we see manifested through cultural scripts in media, culture and family politics. The existence of the Normate as a taken for granted state of being makes the associated sexual scripts powerful. A couple where one or both have disabilities is rather invisible in these cultural contexts, which can make it difficult for people with disabilities to manifest their intrapsychic sexual scripts in the physical world. Other consequences include being denied opportunities for, or access to arenas for, sexual expression, impacts on the interpersonal level. These aspects can be understood in terms of social exclusion and power, where the majority, represented by the Normate, has advantage [14, 48–50], drawing from the powers of narrow cultural scripts of normative bodies and sexualities. This advantage entails the power to structure society in disabling ways, where hindrance of sexual access and expression is one aspect. As outlined in the crip theory of disability and sexuality, the exclusion and stigmatization of people with disabilities rests largely on ‘‘compulsory able-bodiedness […] as a nonidentity, as the natural order of things’’ [6]. This enforcement of the able body as a state of normalcy [47] is in the same way an enforcement of the normal sexuality. As queer theory, crip theory aims at resisting this norm and instead offering a perspective that predicts diversity of bodies and sexualities [6] and shifting focus from what is excluded to the exclusive structures and practices [6, 47]. The normative sexual script that is most visible often centers on vaginal-penile penetration with orgasm as a goal, something that may be impossible for some bodies. Therefore, developing new curricula for health care professionals [51] and sexuality education in rehabilitation programs [52] and in schools [53] are alternative ways of working with self-esteem and body image issues as well as offering guidance for alternative sexual practices that can facilitate sexual expression for people with disabilities [15]. For example, exploration of new erogenous zones and ways to experience pleasure and orgasm [11, 52] means resisting these bodily and sexual norms, but has also been shown to increase sexual creativity and fantasy [16, 42], hence offering new opportunities for exploring and expanding the meanings of sexuality in alternative ways [7, 42]. Therefore, gaining access to the domains of sexuality could mean more than just adapting to mainstream ideals of sexuality but challenging the ways in which sexuality can be understood [12].
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Methods This study was conducted in 2010 and is based on face-to-face in-depth interviews with ten personal assistance users with physical disabilities, as well as initially covert observations on an open online discussion forum in a web community created by and aimed at people with disabilities, with subsequent follow up to individuals for permission to include their data in the study. The combination of in-depth interviews and forum observations allows for a broader perspective on these issues; an interview with a researcher allows for the discussion to be deeper and focused, whilst in an online group discussion with peers, which includes the possibility to remain anonymous, more sensitive or provocative opinions can be shared [54]. The study was approved by and conducted under the research governance procedures of the University of Gothenburg. The research complies with the ethical principles of research according to the codex of the Swedish Research Council [55]. Interviews Interviews were performed according to the general interview guide approach [56]. Initially, demographic/background questions were asked, thereafter questions were open ended and participants were encouraged to talk freely around the topic of sexuality, relating it to whatever other themes they found important [57]. Themes that emerged were for example childhood experiences, identity, relationship to assistants, organization of assistance and prejudice. Subsequently, the same procedure was performed on the topic of personal assistance, and thereafter, unless interviewees brought it up themselves, experience and behavior questions on sexuality and disability were asked [56]. Advertisement for the study was made on the studied web forum and on a few other web sites with connection to physical disability. To be included in the study, participants had to be over 18 years of age, be living with a physical disability (of their own definition) and receiving formal personal assistance services (to any extent). As a result, one man and nine women volunteered to participate. Because of the uneven distribution, the only male participant’s name was changed into a female name in order to ensure confidentiality. All names were changed into pseudonyms (in the present paper presented with initials). The ages of the participants ranged from 27to 40 and they resided in urban areas. Six of the participants were partnered, some with disabled and others with non-disabled partners. Four participants were single and two had children. Participants had a range of experiences associated with physical disability, including congenital disorders, progressive conditions and acquired disabilities. Participants received personal assistance to various degrees ranging from eight hours a day to 24 h a day, and from different types of providers (municipalities, private companies and user cooperatives). Since the focus of the study was on participants’ own experiences of their sexuality and disability of their own definition as it related to personal assistance, no exclusion was made on the grounds of diagnostically defined disabilities or experiences of sexuality. Interview participants expressed their gratefulness of being able to participate in a study on sexuality, since they had never—or in very few cases—been asked about their views on the topic before, an opinion shared by participants in similar studies [58, 59]. Participants were never asked to share details of intimate experiences unless doing so voluntarily, hence interview questions were not likely to be perceived as particularly intimate.
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Forum Observations The author wrote a post on the forum, informing about the study, that observation would be conducted and that interview participants were searched for. Discussions on the forum were observed during a 6-month period, where some threads were written up to some years back and where the discussion had ended while others were new and ongoing. Threads chosen to be included as data were gathered under the themes titled Love and Sex and Living with Personal Assistance. The forum is accessible to anyone and no registration is needed in order to read the discussions, only to post, however, anonymous posting is possible. Most users were posting through pseudonyms chosen upon registration, where a possibility to present oneself on a personal page appeared. Here, most users presented their specific disability, their age, place of residence and sometimes also their real names and other personal features. Only a few users reported their marital/household status and their amount of assistance received, hence, this was not inclusionary criteria. In the final material, forum participants included 6 men and 11 women of ages ranging from 18 to 53. Their places of residency were spread throughout Sweden, ranging from rural to metropolitan areas. As in the case of the interview participants, some users reported physical disabilities from congenital disorders and others from acquired injuries. Regarding reliability of forum data, the validity of this personal information was not tested; however studies have shown that people are often sincere [60]. The criteria on which participants accounts were included was therefore more strongly tied to the meaning of their accounts than on their personal characteristics (if any were available) [61]. For example since some posts were anonymous there was no other criterion than the content of the account. In those cases where it was possible, users of the citations chosen to be included in the study were contacted through their personal pages, informed in the same manner as interviewees about the study and asked to give informed consent, which they all gave. Pseudonyms were changed in order to protect the integrity of users, which is additionally strengthened through translation of their accounts and not mentioning the forum’s web address [61]. The ethics of internet research of this kind is ambiguous, since all information online (in this forum) is already public and it could be assumed that users were aware of this when posting [61]. However, users of online forums might not be thinking of their posts being read by others than fellow users, ‘‘lurkers’’ or others interested in these issues, making the line of thought of their posts being used in research somewhat unexpected [62] and often negatively received [63]. Regarding, as in the present case, forums, considerations must not only be made in order to protect individuals, but also the collective (ibid.). The dichotomy of private versus public is not applicable on the internet in the same way as IRL, since various communities have different types of arrangements [64] and perceived sense of privacy can vary within the forum as well [61]. Neither is it possible to discuss what counts as intimate and not in the same way, since people might share very private details on the internet that they wouldn’t have shared IRL, depending on how they use the specific community. Therefore, the Association of Internet Researchers (AoIR) has agreed that it is not possible to develop a comprehensive set of ethical codes for internet research since specific case circumstances are critical [61].
Analysis Interviews were transcribed after each interview and chosen threads from the forum were copied into Word documents. The data was then manually analyzed together. Initially,
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using an inductive content analysis approach, the meaning of accounts was distinguished and emerging themes were mapped out and sorted through open and subsequently focused coding [56]. The frame of analysis was to focus on what experiences and meanings participants attached to sexuality and personal assistance. In a second phase data was revisited and compared to pre-existing literature dealing with sexual facilitation, analyzing the data deductively focused from this perspective.
Results Experiences of Sexuality in an Able-Bodied Society I would like it to be as natural to discuss the body, sexuality and feelings, as it is to discuss how to sit right in the chair! (Y, female, 36, forum user) As expressed by the forum user above, participants had at some point experienced the lack of attention to their sexuality. Y’s account is a reference to the habilitation services, something that most disabled people come in contact with on a regular basis from their birth and up to 20 years of age, if not longer. That such an extensive service neglects sexuality is of course something that can form personal experiences of body, sexuality and possibilities to be sexual. Several of the participants articulated a lack in sexual knowledge because of this. This in turn made some of the participants develop low self-confidence and sexual self-esteem, limiting their possibilities: I didn’t get any boyfriends because of all of this… except the one guy in our class who was also bullied. But not a real boyfriend. Unfortunately, it has therefore been easier for me to date handicapped people. ‘Cause they kind of know what you’re going through. A person who isn’t handicapped doesn’t know, well sometimes they do, but most of the time they don’t, so it’s been easier for me this way. (A-L, female, 31, interviewee) For some people, as for the interviewee above, who lacked the appropriate amount of support from family and professionals, growing up in such a societal context makes internalization of ableist views difficult to avoid. The experience of having to struggle for sexual recognition occurred with other professionals as well. E, 39, in her interview accounted for when she was pregnant and applied for special assistance during the hospital stay. Her case worker replied that she did not even know that E could get pregnant. E answered ‘‘Well, I didn’t know I had to apply for that as well’’ which made the case worker realize her mistake. M, 30, tells a similar story in her interview about seeing a gynecologist, who asked her whether or not it was possible to undertake a gynecological examination and later when discussing preventive methods, asking if she could have sex at all. M responded jokingly by saying that yes, her impairment is in her legs, not between them, telling that humor is her general strategy when dealing with incompetent people, a strategy found in other studies as well [31, 65]. Another aspect accounted for by participants was the struggle for sexual recognition in social contexts. There were several accounts of being denied or given a sexual identity against one’s will. M and another interviewee, G, 27, said that they did not enjoy going out to clubs and the like anymore, after several sexual harassments and other offensive experiences as well as being openly ignored and dismissed due to their disability:
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Pubs are a story in itself, I don’t like them… Either there are those who are like ‘‘I gotta have sex with you ‘cause you have a disability and I’ve never been with a disabled person before!’’ or there are those who don’t even dare approaching you… (M, female, 30, interviewee) On the forum there were discussions dealing with similar issues. In one thread participants discussed whether or not to disclose one’s disability in one’s online dating profile, and if not, at what point in the (online) relationship this could or should be done. B, 32, one of the discussants, wrote about his experiences of internet dating. He said that he had experienced people backing out after quite a long contact after he told them about his disability ‘‘even when you think you know the person pretty well’’. Other times when he tried the opposite strategy, people contacted him for sexual relations only because he had a disability and assumed he probably had not had any previous sexual experiences. Physical inaccessibility and inadequate disability services were also recounted as impacting upon sexual opportunities. O, 36, in her interview told about how she and her boyfriend, who also had a disability, sometimes could not go out together if they needed public transportation, since it was against safety regulations to travel with more than two wheelchairs per tram. Several other participants also told about how the special disability transportation system (Fa¨rdtja¨nst [66]) was not an option to use, since it was both more expensive and more unreliable than regular public transport. It could happen that it did not come at all, it had to be booked long in advance and it made long detours for picking up additional passengers. And it was definitely not an option if you wanted to go home with somebody you had picked up from for example a bar, since it was not allowed to bring passengers on board who were not assistants. These experiences are examples of how cultural scripts of sexuality impact upon people with disabilities on individual and interpersonal levels in situations that are not directly tied to sex, but factors that may influence for example possibilities to meet people. The forms of sexual expression in relation to these societal norms were also discussed: I think it’s about a general view of humanity. We’re not so good at affirming what’s not normative, and it’s not only about people with impairments, it’s about, well, sexuality and everything. We should really consider how we want things to be in our society—do we want it to be for everybody or only some? (G, female, 27, interviewee) G’s comment is shared by many on both the forum and in interviews. Experiences of living in an exclusive society where there is no place for people not fitting the Normate were evident. This theme was further discussed in relation to how to actually perform your sexuality outside of able-bodied sexual values. Therefore, communicating sexual issues with one’s partner(s) can be important for managing a sexual life as desired: The guys I’ve been dating, sure, they’ve been wondering at first, like ‘‘can you have sex’’ and so on. But then when I’ve told them and explained, there’s nothing more to it. I haven’t experienced it as a hinder for me. Sure, I’m not the world’s most… you know, my muscles strike sometimes but then I just need a helping hand, or if they [the muscles] lock down, we wait a bit. (M, female, 30, interviewee) T, 40, an interviewee receiving 96 h of assistance per week, says that sex is so much more than just penetration and that sex can be done in many different ways, though not recognized in mainstream society. The importance of intimacy and love rather than ‘‘to do it’’ was expressed as most important for some. As E, an interviewee with around the clock
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assistance (including from her husband), recounted when she was in the hospital, after much battle with the personnel she and her husband managed to get him a bed to be able to stay overnight; ‘‘Not because we would be able to have sex there, but just the fact that he could lie there beside me, hold my hand, caress me… I was so happy!’’ Not being able to have sex in a way thought of as sex in mainstream society does hence not indicate tragedy per se. Concluding these accounts, we can see how the struggle for sexual recognition occurs in many different settings and on many different levels. Feelings of sexual insecurity can be a consequence on the intrapsychic level when being met as a non-sexual person on interpersonal and cultural levels. Physical obstacles and inadequate organization of disability services can hinder possibilities for sexual interaction. All of these factors stem from normative societal views exclusive of variations in sexual expression and sexual identity. Experiences of Personal Assistance Adding personal assistance to the picture can further complicate issues of sexuality and disability. Especially in the teenage years when still living at home with parents and additionally needing the help of assistants, it can be hard to explore and develop one’s sexuality, whether it is physically alone or with partner(s) or socially with peers by going to parties and accessing situations where there is sexual potential. K, 28, in her interview told that when growing up she found it hard to set appropriate boundaries with the assistants and that she had no one to talk to about these issues: It is something in that dependency, something that happens… a feeling of not being in control. My way of handling this was by stressing as much as possible how important it was to keep my integrity, by keeping them [the assistants] away from me at times, not telling them everything [about myself], otherwise I would feel too exposed. (K, female, 28, interviewee) Establishing an adequate relationship with assistants can be hard since there are no specifications on how this relationship should be but it is up to the individual user to decide. Some participants found it especially hard to balance between friendship and professionalism as well as between the assistant acting as a parent and as a professional assistant. Participants had different strategies to manage this relationship even as adults. Some of the participants had a more friend-like relationship with their assistants, even seeing them in their leisure time, inviting them to parties and so on. Others were very strictly professional, treating their assistants almost as robots, as told by H, 35, a female interviewee receiving assistance around the clock and who was hiring her assistants from the security business. H, and others like her, did not want the friendly type of relationship with their assistants as this was experienced as causing difficulties being fully independent and private when needed. On the contrary, for example M, an interviewee receiving assistance 8 h per day, said that she had a very close relationship to her assistants and that this was the only way she could imagine arranging it: I would find it really strange if… I mean, just imagine a person coming into my home, into my private place, helping me with everything, getting to see me naked, knowing exactly where my underwear are… comes in and says ‘‘Hello’’, and nothing else - it would just feel really strange! So it would be like ‘‘Hi - and who are you? No, I’m just your assistant for the day. Ok, here I am, all naked, but nice meeting you too!’’ So it wouldn’t work any other way for me. (M, female, 30, interviewee)
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Several participants balanced between these two extremes. A common theme was the continuous search for a trustful and comfortable relationship, making it easier to focus on the assistance being executed smoothly as well as being able to discuss intimate things, such as sexuality, frankly. This was of great importance for feeling safe in expressing sexuality as desired, as shown in the following accounts from the forum, where this was not the case: What should I do not to feel embarrassed about asking my assistant to put me naked in bed? We disabled people also have the need to pleasure ourselves, don’t we? I find this so embarrassing I refrain from this ‘cause I can’t undress and put myself to bed. Anyone have any tips on what to do? (Anonymous forum user 1) I’ve really got the feeling that people don’t think we disabled people have sex. Doesn’t get easier living with assistance. Something happened that I’d like to share here to get some advice but I’d like to remain anonymous. My boyfriend and I had sex one morning and when my assistant came into my bedroom to start helping with my morning routine, she says ‘‘did you guys have sex or what? Do you really have to do that when we work?’’ Well, the thing is I have assistance around the clock. (Anonymous forum user 2) The opinions expressed in the quotations above are similar to ones presented in an Australian study [58]. On the one hand are the rights of the assistants not to do things against their will and on the other hand are the assistance users trying to live their life according to their wishes—which may not be possible without support from assistants. To not even dare ask for help can be interpreted as having conceptions of it being wrong—conceptions that are widespread through cultural and interpersonal sexual scripts. On the other hand, there might also be cases where the assistant does things they don’t want to in fear of losing their job, since the terms of employment for assistants states that they can be dismissed without further notice if they do not perform the services as desired by the assistance user [67]. Either way, the lack of appropriate communication causes many situations where both parties are unsure of how to manage. In the end, this affects the assistance user’s possibility to live autonomously and express their sexuality as desired. But as T’s account suggests, not everyone sees connections with sexuality and personal assistance: Well, assistance has nothing to do with sexuality - it is there to help you physically, bodily, in order to… and I’ll be honest and tell you that if I don’t have, or am close to someone, this sexuality thing… I don’t miss someone when I don’t have someone. But I know some people do. (T, female, 40, interviewee) This may be due to T not needing assistance in sexual situations. It can also be due to her view of sexuality as something that she does not need. The view of people with disabilities as tragic because of their (perceived) impossibilities to have sex, can also be tied to cultural scripts of sex being a very important part of life that one cannot live without. Therefore, it might be hard for opposing scripts to gain territory. But also in other cases, where sex is not perceived as something vital, it can be hard to express one’s wishes. O says that even though she herself chose to have a somewhat more friendly type of relationship with her assistants, it can also cause obstacles in sexual opportunities: Sometimes it feels harsh to tell them [the assistants] that ‘‘Now we want to be alone, can you go out for an hour?’’ while it’s winter outside… it’s easier during summertime. So you don’t put yourself in the first room. It’d be nice if the person wasn’t around, but it feels harsh to send someone away like that. (O, female, 36, interviewee)
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Another situation where the relationship and boundaries with the assistant are of special importance is when having a child, according to E, who accounted for how she and her husband carefully considered how they would manage and what role the assistant would have in the upbringing of their child. This was something that R, 35, single mother of two, constantly struggled with in her daily life with assistants who sometimes took too much of a parental role in their assisting. O continued telling that she sometimes needed to postpone planned activities to when the appropriate assistant was on duty, since not everyone is suited for every aspect of her needs. Several of the participants told similar stories with regards to, for example, the gender of the assistants, which can be important for specific intimacy influenced activities such as genital shaving. V, 33, a female forum user, wrote to ask how to deal with bodily integrity when so many different people (professionals) are handling your body in different ways. S, an interviewee receiving assistance 96 h per week, said that she would never get used to other people having such open access to her body. I accounted for how she has dealt with this: When it comes to me, I think I’ve come to a stage where I see myself rather, how should I express it, objectively. I, like, depersonalize myself. So [assistance] is a service that I use, like getting my hair cut. (H, female, 35, interviewee) Being comfortable in one’s body can be essential for sexual well-being; this is why having assistants that one can feel comfortable with is of great importance. Participants reported a wish for assistants to receive better training. Some gave their assistants their own kind of education, while others told assistants to educate themselves in different topics. Studies have shown how sexuality training in fact improves professionals’ attitudes and practices [68–70]. However, participants also expressed a wish not to educate assistants too much, since no education can in fact teach anybody about their individual needs fully. Still, general training on a basic level regarding ethics and different aspects of disability as related to sexuality was wished for. What was also expressed as important was the possibility to engage an assistant fully through good communication and a trustful relationship, though this could be rather time consuming and would require assistants to work with them over a substantial time period. This could be hard since the job is regarded as low status and often employs students for extra work as well as members of the unskilled workforce, a trend also evident in other countries, e.g. The UK and Norway [7, 23, 58], where it has been found that assistants are often ‘‘aiming for higher positions in the labor market after finishing their personal assistance work’’ [71]. Summarizing the experiences of personal assistance in relation to sexuality, it is possible to see how different personality traits and qualifications of the assistants are factors influencing the assistance users’ sexuality, both in terms of sexual expression and in feelings of being a sexual person. Participants’ accounts also suggest that there are different types of relationships that can be developed with assistants, suggesting that these interpersonal scripts have different implications for sexual expression and experiences of intrapsychic levels. Sexual Agency and Strategies for Alternative Sexual Expression It’s not like my husband can pull me down on the couch and have sex with me in the middle of the day’’ (C, female, 30, interviewee) Another aspect of living with personal assistance was its impact on social and family life. It was not only the service user but also friends, partners and children who had to
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adjust. As C describes in the quotation above, the spontaneity and possibilities for sexual expression have decreased since she started receiving full-time personal assistance after an acquired injury, which has limited her husband’s possibilities as well, something that other participants account for as well: Of course, you aim to be discreet! It’s not like I would… I mean, I wouldn’t want to be that open… to the degree that they would hear or see something, so I try to save that for when we’re alone. (K, female, interviewee) Similar discussions were found on the forum as well, so it seems as if participants are aware of certain codes of conduct or morals regarding how to behave, what is acceptable and what is not, i.e. sexual scripts. Even if these are codes everyone is aware of and needs to consider, assistance users also need to consider them in their own home, something that most non-disabled people do not. In other words, cultural and interpersonal scripts may imply that in situations where assistants are present, having sex openly or being too loud is not acceptable. H says that it therefore is quite impossible to be spontaneous: No, I think you have to send them [the assistants] out actually. I don’t know, but I would not feel comfortable having somebody in the next room. And of respect for the assistant as well, they shouldn’t feel uncomfortable or ashamed or something. You just have to say like, we want to be alone for a while. It doesn’t work having somebody around all the time… (H, female, 35, interviewee) H and S both have had non-disabled partners who wanted to live without assistants in favor of themselves working as their assistants, but both of them said that this did not work out in the long run and that they would rather have professional assistance. S said that it was sometimes hard to ask her (now ex) husband to do things that she knew he did not like or if she saw that he was tired after coming home from work. She then rather did not ask, even though she needed the assistance. S understood how this affected her health and wellbeing, but she chose to favor her relationship. H said that she felt more independent and free with assistance than when relying on a partner. Other participants chose to have their (non-disabled) partners as assistants for example during the nights, so that they could have some alone time. There were several other strategies that participants adopted to facilitate privacy. K, who received assistance 8 h a day, 5 days a week, recounted how she and her cohabitant partner, who received around-the-clock assistance, had several different strategies for managing their sexual life. They asked their assistant(s) to watch a movie with headphones on, so that they could be noisy without having to think of the assistants being present, a strategy discussed on the forum as well. However, K said that it was hard to entirely ignore and get used to; ‘‘It’s good there’re doors and stuff like that… But it’s really important there is respect, respecting integrity and so on. But either way, you adapt’’. Another strategy was to ask the assistant currently on duty to leave earlier and the next assistant on duty to come in later. In that way they could get a few hours in private. Similar situations were discussed on the forum; a common tip was to arrange a special ‘‘assistant room’’. However, this was not possible for those who lived in small apartments and hence sexuality is impacted by economic factors as well—or as Shakespeare [12] stated; ‘‘Being sexual costs money’’ (ibid:161, see also [11]). A forum user said that they had a small apartment and therefore did not feel comfortable even though the assistant was in another room. So these strategies also depended on the assistants being understanding in the first place, which is not always the case [72]. But the answers from other forum participants were clear:
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Shopping for a prostitute is illegal, so I think any assistant has the right to refuse. But being ‘‘bothered’’ by users having sex when living in a small apartment, that they just have to endure – no one has the right to repress someone else’s sexuality, especially not in their own home! (Z, female, 48, forum user) An assistance user doesn’t have the possibility to change lives, while an assistant has the possibility to change jobs! (W, male, 18, forum user) When discussing sexual facilitation, none of the participants in this study wished their assistants to assist more than to the most basic degree, e.g. undressing, putting in position, putting on a porn movie, putting on condoms or assisting with other aids. Hence, participants drew the line between receiving assistance in order to be able to be sexual on your own or with partner(s) and receiving assistance in the actual sexual activity, which was thought of as crossing the line. However, not all participants felt that they could manage receiving even basic sexual facilitation, even though they agreed it was the user’s right according to the LSS-law, Human rights and the UN Convention of the Rights of Persons with Disabilities. Some participants felt it would damage the professional relationship with the assistant while others felt it would be too much of an intrusion of their privacy and bodily integrity. However, useful aids, information from health care professionals and similar factors influencing possibilities for sexual expression without direct professional intervention, were sought after but experienced as nonexistent today. What was experienced as difficult was when to inform the assistants that (basic) sexual facilitation might be included in the job, or that hearing of the user(s) having sex could occur: To tell the potential assistant in the interview all the intimate details about you might be easy for some to handle, but not for everyone. But as an adult and human being with your own sexual needs, it shouldn’t be surprising for them that the user has such needs themselves. (Q, female, 52, forum user) The interview situation was also discussed in relation to secrecy law, since this did not apply outside of a professional relationship. Hence, if not hiring the applicant, they might spread intimate details about the assistance user, which was experienced as frightening. Participants also found it would be hard to balance between their rights according to the LSS-law and the UN Convention of the Rights of Persons with Disabilities against the Law against Purchase of Sexual Favors, the Work Environmental Law and the Law against Sexual Harassments. Would it, for example, be possible to report an assistance user for sexual harassment if they made the assistant put on a porn movie and a condom, if the assistant felt this damaged their well-being and working environment, while at the same time, the assistance user remains within their right to have their sexual needs facilitated, and in a position to fire the assistant if he or she were unwilling to do so? Participants agreed that many situations like this might be avoided if there was better dialogue between users, assistants and providers, and every party was aware of their rights and responsibilities. But because of lack of guidelines in this area, this was seldom the case. The situation in Denmark was also discussed on the forum, but most of the people who partook in this discussion rejected the practice there. D, a male 42-year old forum user, said that he would rather be alone or without sex rather than having someone who was not his lover or at least an equal partner facilitate his sexual needs. An anonymous participant wrote ‘‘it would look bad for disabled people if only they were allowed this’’. Several discussants also wrote that sex is not a right but a ‘‘grace’’ to be deserved through love or other forms of mutual consent not attainable when money is involved, implying strong
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sexual scripts regarding sexuality as connected to love. There was one forum user, however, who wrote that ‘‘the sex workers’ right to sell sex is the same as disabled people’s right to express their sexuality’’. This post received a lot of negative reactions and further indicates the presence of cultural scripts that do not accept the discourse of sex for money. However, some of the participants also expressed a concern towards their future in which either their own or their partner’s disability could worsen, in which case they might not be able to manage sexually on their own anymore. Both interviewees and forum users agreed on the fact that it ought to be the prerequisites for sexual expression that should be facilitated, for example, adequate sex education and development of sexual esteem and a desired identity as well as increased physical and financial accessibility, all of which would facilitate sexuality in different ways. In the forum, questions regarding different disabilities and sexual positioning occurred, which additionally shows a need for increased information on sexuality in school and health care services. Thus, it is not so much the sex per se that troubles participants, but the social and cultural factors surrounding it. How participants experience their identity, sexuality and possibilities to be sexual, i.e. intrapsychic sexual scripts, are strongly influenced by personal assistants and other people around them, i.e. interpersonal sexual scripts, and by societal norms and values surrounding sexuality, i.e. cultural scripts. Several participants have managed to balance these sometimes opposing forces and developed strategies to feel, identify and be sexual as they wish, while others have yet to overcome insecurities or inadequate relationships to assistants in order to do this.
Discussion The Interplay of Sexual Scripts The experiences of sexuality among participants in this study can clearly be seen in the context of the able-bodied sexual values apparent in society [5]. Participants, both on the forum and in interviews, have had similar experiences regarding how they had to struggle for sexual recognition with different professionals and people in the community. For many, this experience has started early in life, where views of people with disabilities as nonsexual persons were internalized with some participants, making it harder to learn ways of exploring sexuality as well as being invited to arenas for sexual opportunities. It is therefore evident how experiences from childhood and adolescence can influence how selfimagery and sexual confidence in adulthood are displayed [13]. In this we see the interplay between intrapsychic, interpersonal and cultural scripts, where intrapsychic scripts of being sexual do not conform to interpersonal scripts [40] displayed in relations with professionals, drawing from cultural scripts of the Normate body [47] and sexuality [46] where people with disabilities are forgotten [12]. Additionally, other social arenas where there is potential for sexual interaction display the same patterns of exclusionary or ignoring attitudes, again, making individual feelings of the sexual self disrupted. However, when having a partner with whom sexuality can be acted out in the desired ways, these surrounding negative attitudes do not seem to be as disturbing, implying a positive force in interpersonal scripts between sexual partners over those between assistance user and assistant, or cultural scripts. Nevertheless, when being faced with physical obstacles such as inadequate transportation or housing or inferior economic conditions, these are less helpful. It then becomes evident how cultural sexual
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scripts influence not only the sexual acts per se but also many surrounding factors that may be needed in order to be able to reach desired sexual goals [7]. When discussing sexuality in relation to personal assistance services, it becomes evident how these cultural scripts find their ways of influence through the personal assistants, making the interplay of interpersonal scripts between assistance user and assistant come to the fore. There are examples of participants not daring to ask for help in sexual situations or its planning, or being treated badly when being confronted by assistants in sexual situations. One important factor discussed in how these kinds of issues can be avoided is through the development of good communication and a trustful relationship with assistants, where issues of all kinds, including those relating to sexuality, can be discussed in an open and frank manner. Then, it may be possible to prevent or overcome potential disagreements regarding what the assistance should and could entail with regards to the assistance user’s sexuality—in other words, balancing intrapsychic and interpersonal sexual scripts. However, since assistance services are unregulated and individualized, many assistants come unskilled and without ambitions of professionalization. Additionally, when services were in fact designed to avoid too much professional influence, there is insecurity among users in how to manage the relationship. However, there seems to be a strong positioning toward a rights perspective where assistance users’ rights are in the forefront, something that stands in relation to strong rights oriented approaches in disability organization, making this culture’s script evident. However, that this culture’s focus on sexuality has not been under too much consideration is also evident in the still very slow progression in this area of living conditions being fought for. Alternative Strategies or Just Alternative Ways of Exclusion? Participants found different ways of being sexual agents as well as strategies for alternative sexual expression in resistance to existing able-bodied sexual norms [6]. Arranging assistance in different ways in order to facilitate privacy was common and often successful, but feelings of unease could still be evident. In either of the two extremes shown, ranging from assistants acting as friends to assistants acting as robots, participants expressed uncertainty in how to manage privacy and integrity. Comfortable and easy-going assistance was described as when a minimum of orders for when and how tasks should be executed was needed—factors stemming from an often long and intense forming of the relationship, not always possible with regards to the assistant labor market. Assistants acting as friends and where the relationship was more deep, might be able to achieve this, whilst with the ‘‘robots’’ assistance was more mechanic. The type of relationship might therefore have implications for sexuality, since it either might be harder or easier to ask a friendly or respectively a ‘‘robot’’ for sexual facilitation. Hence, it seems to be highly individual factors influencing, making it hard to develop general guidelines. However, even with adequate assistance, participants accounted for not being able to fully get used to being dependent on assistance. Therefore, a common strategy was to hire their non-disabled partners as assistants during nights, weekends and/or vacations. It is thus evident how it is also possible to choose which sexual scripts one wants to relate to, something that of course might not be possible for everybody, for example persons without partners. None of the participants had experiences of having, or were willing to have, their sexuality facilitated by assistants to a higher degree. One explanation could be that participants in this study were either not that severely disabled or they had a less or nondisabled partner, making the need for sexual facilitation by assistants less apparent. Some of the participants openly expressed their wish to only partner non-disabled people, which
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could be interpreted as a strategy to achieve the same goals of sexual expression and fulfillment as those people in other countries fighting for sexual facilitation by professionals for people with disabilities (e.g. Australia, see Touching Base Inc. [73]). Most of the participants also had strategies to manage privacy and sexual expression in a way that were sufficient enough to them without the need of help from professionals. On the other hand, there were also examples of not daring to ask for this help. Not having experienced the need for sexual facilitation, or not recognizing such needs as legitimate, could be other explanations working on the different levels of sexual scripts. Participants may have adopted the normative view of sexuality as something private and not to be considered within assistance services, and hence are not used to fighting for their sexual rights or do not feel they deserve any sexual facilitation at all. Although this may be true for some, it is arguably not a good enough explanation. For example, the Federation of Young Disabled is loudly fighting for sexual recognition and trying to bring sexuality issues to the fore and to have them viewed as an important aspect to consider in personal assistance services. The cry for help from different forum users and the following advises given from other users is an example of this need. Another possible explanation is the difference in discourses on sexuality in Sweden and in the other countries where a variety of measures for sexual facilitation is formalized (e.g. Denmark, the Netherlands, and Australia). The Swedish law against purchase of sexual favors is an expression of a cultural script within which prostitution is considered to be part of a patriarchal and discriminatory society that oppresses women. Being assisted in sexual acts is experienced as vastly different from being assisted to eat or undress, on all levels of sexual scripts. Participants draw a firm line between being assisted in order to be able to fulfill their sexuality on their own or with partners and being assisted in the actual sexual situation. Working on facilitating sexual opportunities and sexual access, i.e. adequate services that focus on the factors leading up to the point of sexual expression, which then are performed in the most comfortable way possible for the person(s) involved, are seen as the most important issues to work on. The Status Quo of Normalcy Participants discuss sexuality in relation to ‘‘normal sexuality’’ both positively and negatively. On the one hand, it is experiences as hard to be fully accepted as a ‘‘sexual citizen’’ in a society where able-bodied sexual values are on the top of the hierarchy, but on the other hand, alternative sexuality is discussed in terms of sexual normality, even if it poses as an alternative version. Might this be interpreted as an ambivalent stance toward mainstream society, as on the one hand something one wants to be part of on the same terms as everybody else and being regarded as ‘‘normal’’ and on the other hand, being part of mainstream society on one’s own terms, with an alternative sexuality, but nevertheless being regarded as ‘‘normal’’. This stance might pose as a paradox in terms of normality, where the Normate [47] requires for something that is divergent to exist. It is therefore questionable if crip theory [4] is helpful and not only idealistic in its notion to widen the notion of bodily and sexual normalcy? However, the further question remains as to what ‘‘a good life’’ with personal assistance entails. There is a need for practical strategies, for example as one participant pointed out, that professionalization of personal assistants would work to strengthen the positions of assistance users, and thereby increasing the value and meaning of the services. This implies that in order to be able to live a good (sexual) life proper personal assistance is needed.
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Conclusions Qualitative studies provide a unique insight into the perspectives of the subjects being studied. In the present study focus has been on exploring perspectives that have never been studied before in Sweden. People with physical disabilities using formal personal assistance services may face several complex issues surrounding their sexuality, since aspects of being in need of others in order to be sexual may be apparent, when at the same time different laws intersect in ways that may hinder this in practice. However, in the present study, informants did not focus so much on the facilitation of their sexuality by assistants, as on the relationship with assistants, attitudes from professionals and others in the community and alternative ways of being sexual in relation to normative sexual values. A limitation in the study includes a gender perspective, since nine out of ten interviewees were female and a majority of the forum participants as well. It has been suggested elsewhere [7] that discussions about sexuality in relation to people with disabilities, as in many other cases, derives from male perspectives, implying a need to explore this in terms of gender and power dynamics. Another limitation is in relation to age, since most informants were in their 30’s, suggesting age-related experiences being displayed. As formerly shown [44], sexuality can be experienced and related to very differently depending on age. Class, ‘‘race’’ and sexual orientation may be other factors influencing experiences of sexuality not covered in the present study. These factors imply a need for an intersectional analysis of disability, sexuality and personal assistance.
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