The power of discretion and the discretion of power: personal assistants and sexual facilitation in disability services

The power of discretion and the discretion of power: personal assistants and sexual facilitation in disability services

Julia Bahner*

Department of Social Work, University of Gothenburg, Gothenburg, Sweden

Abstract

Aim: The purpose of this article is to explore how personal assistants, working in state-funded services for mobility-disabled people in Sweden, perceive and experience their work, with special focus on sexual facilitation (assistance with sexual activities).

Background: Personal assistance services are a legal right, aiming to give certain disabled people the possibility to live on equal terms in society with non-disabled citizens. The services are to be grounded on the principles of self-determination, autonomy, integrity, and user influence according to independent-living ideology. However, the legislation does not mention sexuality, and in addition, there are often no local policies; hence, it is unclear what service users can demand in terms of sexual facilitation, and on the assistants’ part, what is and what is not acceptable to assist with.

Methods: The methods used to gather data were interviews with 15 personal assistants as well as observations in an online discussion forum for personal assistants.

Findings: The analysis suggests that personal assistants may experience that there is a taboo against discussing sexual facilitation in the workplace. There are no predetermined policies, regulations, or ethical codes of conduct regarding sexual facilitation, and the personal assistants’ discretion is therefore strong. Different strategies for managing this discretion were identified, greatly influenced by personal values, as well as societal norms.

Conclusion: The normative context of discretion is highly visible, suggesting the importance of uncovering the interplay between the power dimensions of sexuality, disability, gender, and professionalism.

Keywords: Sexuality; gender; disability; personal assistance services; professionalism

(Published: 21 October 2013)

*Correspondence to: Julia Bahner, Department of Social Work, P.O. Box 720, S-405 30 Göteborg, Sweden. Email: julia.bahner@socwork.gu.se

© 2013 J. Bahner. This is an Open Access article distributed under the terms of the Creative Commons Attribution 3.0 Unported (CC BY 3.0) License (http://creativecommons.org/licenses/by/3.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Citation: Vulnerable Groups & Inclusion. http://dx.doi.org/10.3402/vgi.v4i0.20673

 

This article aims to analyze personal assistants’ thoughts and experiences concerning sexual facilitation in relation to disability, sexuality, gender, and professionalism. The issues in focus concern which situations they describe as relevant for sexual facilitation, what meanings they assign to sexual facilitation, and what strategies they have for dealing with sexual facilitation. In order to understand these questions, the framework of personal assistance services will be briefly outlined. Personal assistance became a legal right in 1994, when the Act concerning Support and Service for Certain Persons with Functional Impairments (SFS, 1993, p. 387) was introduced as a result of a reform of Swedish disability policies. The services are based on independent-living ideology, and they aim to make it possible for this group to live in society on the same terms as non-disabled citizens in accordance with the guiding principles of autonomy, integrity, and self-determination and, additionally, under good living conditions (Proposition, 1992/93, p. 159). Furthermore, the services aim to move from what was formerly experienced by service users as professional dominance to user influence and authority, which is a clear sign of an ideological shift in services from care to assistance. Services are therefore to be individually planned in accordance with the service users’ wishes, in an empowering attempt to give service users more power over how their life should be led (Gough, 1994). It is financed by direct payments, making it possible for eligible service users to employ personal assistants according to their own needs and wishes, either by the service user herself/himself (2.5%) or through a municipality (39.5%), private (for-profit) company (47%), or service-user cooperative (10.1%) (The Swedish Social Insurance Agency, 2013).

However, increased power and rights can be constrained by a lack of knowledge of the lawful aims of personal assistance (Larsson, 2008) or an (un)willingness by personal assistants to execute certain services (Barron, 2001), such as sexual facilitation. Sexual facilitation can entail services ranging from showing an open attitude toward the service users’ sexual expressions to preparations before engaging in sexual activity and hands-on assistance in sexual acts (Earle, 1999). Facilitated sex is not regulated in Swedish personal assistance services but is instead up to each individual service user and assistant to negotiate, unless the service provider has decided to give instructions (Lewin, 2011; Olsson, 2011). Awareness of the possible influence of professional practices on service users’ lives is therefore important to highlight, since previous studies show that personal assistants’ beliefs and moral judgments may influence and cause attitudinal barriers in the sexual expression of service users (Bahner, 2012; Browne & Russell, 2005; Earle, 1999). Consequently, the social control of sexuality can be understood as effective (Traen, 2008). It has therefore been suggested that agencies providing personal assistance should raise personal assistants’ awareness of disabled people’s possible sexual needs and wishes for sexual facilitation (Shakespeare, Gillespie-Sells, & Davies, 1996), and that social policy should provide the prerequisites for this work, as done for example in Denmark (Kulick, 2012). However, the issue of facilitated sex has not been prioritized by the Swedish disability movement until recently (Svensk, 2011) and the social barriers of prejudice, negative attitudes, and silence surrounding disabled people’s sexuality in lay society are still evident (Shakespeare et al., 1996; Shuttleworth, 2010). Hence, the vulnerability of disabled service users in relation to sexual facilitation is well documented; however, the state of the personal assistants is less so. It has been suggested that the strong rights-based services have turned assistants’ working conditions into a factor of vulnerability (Christensen, 2012), but how this relates to sexual facilitation has been given less attention. Before the methods used to gather data are discussed, the chosen theoretical framework will be addressed.

THEORETICAL FRAMEWORK

Disability and sexuality

In this article, disability is understood in terms of socially created disabling barriers that prevent disabled people from participating in society on equal terms with non-disabled people. However, this view does not exclude an understanding of disability as influential in some disabled people’s lives, for example because of chronic pain from a specific impairment which may be evident regardless of full accessibility (Shakespeare, 2006). It acknowledges that impairments can therefore also be understood as socially constituted in opposition to normative ideals of the able and healthy body (Wendell, 1996). These normative ideals are closely related to the ideals surrounding “normal” and “natural” sexuality, including gender roles, sexual orientations, and sexual practices, ideals which in many instances stand in opposition to how the bodies, genders, and sexual expressions of many disabled people are regarded (Marks, 1999; McRuer & Mollow, 2012; Shakespeare, 2000). Autonomy and privacy are also understood as grounds for sexual expression—something that is not always possible when receiving round-the-clock assistance. These “truths” about sexuality (Foucault, 1990) are spread through media, culture, professional practices, social policy, and social values, forming a widespread view in society which excludes disabled people as sexual beings (McRuer, 2006; Shakespeare, 2000; Shildrick, 2007). In turn, this has the consequence that some disabled people are uncertain of how to combine their sexual life with the need for personal assistance (Bahner, 2012; Browne & Russell, 2005). Sexuality is thus largely socially and culturally determined, and it varies depending on the context, situation, and person(s) involved (Gagnon & Simon, 2005). In this study, the relevant context is personal assistance services, and the specific aspect of sexuality under study, is sexual facilitation. Sexual facilitation is understood as the assistance required for the service user to express her/his sexuality in the desired way. In that sense, the term refers to a wide range of issues:

Providing accessible information, fostering an environment which allows intimacy, offering and observing need for privacy, encouraging and enabling social interaction, the procurement of sexual goods, arranging paid-for sexual services, facilitation of masturbation or sexual intercourse with another party (undressing, handling of aids, positioning) and sexual surrogacy. (Earle, 2001)

Therefore, the issue of sexual facilitation within personal assistance services can be regarded as closely related to aspects of gender and professionalism (Burrell & Hearn, 1989), as will be discussed in detail in the next section.

Discretion in personal assistance work

The main topic of this article will concern the studied personal assistants’ views on what a sexual situation is, as well as how they (would) handle such a situation. In this regard, it is necessary to highlight one specific characteristic of personal assistance services, that is, low levels of standardization and high levels of flexibility and individuality, with few prescribed instructions for how to execute tasks. On a daily basis, personal assistants may therefore experience new situations, which they need to decide on their own how to handle. Some personal assistants stay with the service users for longer periods of time, stressing the possible need for assistance during the course of the day, irrespective of what kind of situation. As the work is hard to regulate, standardize and systematically describe, the personal assistant’s view on the work is very influential (Giertz, 2012). Furthermore, the individual character of the services, combined with the frequent occurrence of prolonged periods alone with the service user, requires a well-developed personal chemistry, which may develop into a special type of intimacy resembling friendship (Ungerson, 1999). This in turn, may lead to difficulties for the assistant to know how to behave in order to balance the personal with the professional (Egard, 2010), which may be even harder when dealing with sexual facilitation (Bahner, 2012; Browne & Russell, 2005; Earle, 1999). If the service user experiences that the personal chemistry is failing, this is valid grounds for dismissal (Calleman, 2008). In this regard, the vulnerable position of the assistant is caused by the fact that the work takes place in someone’s private home. However, having someone else in the home other than the person(s) intended for the sexual act may place the service user in a vulnerable position as well. Vulnerability is hence multidimensional and dependent on the specific situation, persons involved and power dimensions in play (Burghardt, 2013).

This discretion is a common characteristic in the work of street-level bureaucrats in human service organizations, where the main aim is “people processing” (Hasenfeld, 2010; Lipsky, 2010). A common dilemma is the need to treat the service users as citizens with individual needs, while at the same time they are framed as bureaucratic subjects within a service-providing organization with limited resources (Lipsky, 2010). There are often situations too complicated to reduce to programmatic formats, which instead require that considerable attention be given to individual aspects. The discretion entails both structural and epistemic dimensions. Discretion is structured as “the hole in a doughnut … an area left open by a surrounding belt of restriction” (Dworkin, 1978, p. 31). Within this area, the worker has the liberty of choice to determine how to act in situations in which the manager has not prescribed any rules, using a certain way of reasoning under these conditions of indeterminacy (Molander & Grimen, 2010, p. 171), highlighting a cognitive dimension. In personal assistance service, Swedish law and local policies are the structural frames. In the case of sexual facilitation, the hole in the doughnut is even greater, as there is no predetermined and specified service ideal in the organization, suggesting strong discretion (Dworkin, 1978, p. 31f). In these instances, norms are common prescriptions for actions, functioning as practical arguments bridging the gap between situation and action. The normative context of discretion in personal assistance, as in much other care work, generally entails a requirement of individualization as the needs attended to are specific to a particular person and situation (Molander & Grimen, 2010). However, considerations of resources, energy, or priority may circumscribe individualization. Another factor is every assistant’s personal burden of judgment as a source of variation and arbitrariness, influenced by interpretation, experiences, and ranking of relevant factors to consider, highlighting the two-sided dimension of discretion (Molander & Grimen, 2010). Furthermore, in contrast to those professions or semi-professions often concerned in theorizing around discretionary practices, personal assistants often have limited formal education and hence lack a common set of ethical and professional codes of conduct, on which the legitimization of their discretion is based. Neither is there strong managerial control to balance this lack of formal professionalism. However, professionals may then execute “an illegitimate resistance against incorporating the full extent of the ideology, or they might try to modify the consequences of empowerment so they can maintain their control” (Askheim, 2003), with the consequence of disempowering service users in cases of informal discretion (Ellis, 2011). The different aspects of power will be further explored in the next section.

An intersection of power dimensions: disability, sexuality, gender, and professionalism

The relationship between the service user and the personal assistant contains multiple dimensions of power. On the individual level, the disabled person, who is no longer simply a passive object of care but an active leader concerning her/his services and with greater control over her/his life, is still dependent on the assistant to execute the services in the desired way in order to be able to retain this control. The personal assistant, however, may be reliant on this employment for her/his (fiscal) survival, as many assistants who are unqualified do not have many other options on the labor market, forming a vulnerable state. These assistants may therefore agree to execute services that may be experienced as offensive (Christensen, 2010), as our jobs are often the basis for our social security benefits, identity and social belonging. However, there are also well-qualified assistants (even if not for assistance work specifically), as many students in Sweden in need of extra work feel that the flexibility of this job offers great freedom in the sense that they can leave it with short notification. However, this also leaves the disabled person in a vulnerable state, as her/his reliance on the personal assistant may be an issue of life or death. The power dimension of disability hence places the service user in a more vulnerable position. Furthermore, on the structural level, disabled people as a group are still often met with prejudicial attitudes and are faced with both physical and social obstacles, obstructing their possibilities of being part of society on the same terms as non-disabled citizens.

Another dimension of power in focus is gender. On a structural level, men have a power advantage over women. However, between a disabled man, who may be at risk of being subject to a process of feminization and infantilization, and a non-disabled woman, there is more often an advantage for the woman, especially if the power dimension of professionalism is included (Moser, 2006). However, personal assistance work and other similar work is mostly populated by women and highly feminized, and hence downgraded in society (Christensen, 2010; Clement, 1996; Dahle, 1990; Tronto, 1993). This points to the biological understandings of gender and gender roles, which are often evident in care work where both women and men tend to prefer female carers (Gough, 1994), presumably due to the fact that women’s care skills are taken-for-granted (Clement, 1996). A recent study suggests that there is a significant difference between “making a contribution to disabled people’s social inclusion on the one hand, and on the other the risk of maintaining the historically gendered tradition of unpaid care work exploitation” in relation to these individualized and weakly regulated service user—care worker relationships (Christensen, 2012, p. 408). In other words, the working conditions may affect personal assistants’ power advantage. These different aspects show the multifaceted character of vulnerability, and highlight a need to analyze vulnerable positions beyond the taken-for-granted identities, of for example disabled people as only passive and women as only oppressed (Burghardt, 2013).

METHODOLOGICAL APPROACH

The research on which this article is based draws from a study conducted in 2012, consisting of qualitative interviews with 15 personal assistants from different organizations (municipalities, private companies, and service-user cooperatives), as well as open observations in an online discussion forum in a web community created by and aimed at personal assistants in Sweden. Previous research combining data from interviews and forum observations has been shown to be successful in offering a broader perspective on the researched issues (Seale, Charteris-Black, MacFarlane, & McPherson, 2009). An interview with a researcher allows for the discussion to be deeper and more focused, whilst in an online group discussion with peers, including the possibility of remaining anonymous, more sensitive or provocative opinions can be shared. Another difference is that in interviews, informants often share retrospective accounts, while forum members often share current experiences (Seale et al., 2009).

Interviews

The interviewees consisted of 11 women and 4 men aged between 23 and 58 years, who had been working as assistants for 6 months to 16 years. None of them were directly employed by the service user but instead through a municipality, private company, or cooperative. They were recruited through contacts with managers of personal assistance services. The researcher sent the managers information sheets regarding the study, and asked them to distribute these to the personal assistants employed in their organization. The personal assistants could thereafter contact the researcher through the contact information provided in the information sheet, without the manager’s knowledge if desired. Interviews were performed following the general interview guide approach (Patton, 2002), starting with questions related to demographic and background issues, followed by open-ended questions (Kvale & Brinkmann, 2009). Interviewees were first encouraged to talk freely about the topic of personal assistance, relating it to whatever other themes they found important. Themes that emerged were, for example, working conditions, disability issues, relationship to service users, and the organization of assistance. Subsequently, the same procedure was performed on the topic of sexuality and assistants were asked to conceptualize their thoughts on this topic. Thereafter, unless interviewees brought it up themselves, experience and behavior questions on sexual facilitation were asked. Assistants were asked about their experiences of sexual facilitation (of their own definition). They were asked whether, and in what ways, they would be willing to facilitate service users’ sexual needs as well as the reasons for this choice.

Forum observations

In light of personal assistants’ working conditions, under which they have few opportunities to meet with colleagues or supervisors to discuss their work during working hours, like other online forums, the one researched here may offer a great opportunity to receive peer support and discuss sensitive subjects (Im & Chee, 2006; Seale et al., 2009). The forum does not deal with sexual facilitation specifically but covers a wide range of topics relating to personal assistance work, and among them sexual facilitation. The forum is organized in categories (e.g. Working conditions, Professional role, and Other), and within these, individual users may initiate so-called discussion threads. Some threads only contain a few posts written within a week, while others may contain hundreds of posts and last for several years. The forum is accessible to anyone and no registration is needed in order to read the discussions, only to post; however, anonymous posting is also possible. Most users were posting using pseudonyms chosen upon registration. It is possible to add personal information upon registration, for example if one is a service user or an assistant, and in the latter case what type of employment one has (municipal, private, cooperative, or directly employed by the service user). This information was used in the primary selection of so-called discussion threads in order to ensure that the person posting was a personal assistant (which can of course never be fully confirmed). I registered as a researcher on the forum and wrote a post to inform about the study and its ethical guidelines, that passive observations would be conducted, and that interviewees were sought. This post did not render any participants for interviews. However, the principal aim of the information was to inform forum users that their discussions would be observed in the frame of a research study, a fact that may be experienced as intrusive for some (Eysenbach & Till, 2001). However, the researcher’s overall experience of the forum from 6 months of observations was that the venue could be characterized as a public rather than a private space, hence waving the requirement of informed consent, in accordance with current ethical codes of internet research (Eysenbach & Till, 2001; McKee & Porter, 2009).

Analysis

Interviews were transcribed manually by the researcher, and each interview constituted a separate Word document. Discussion threads of relevance were manually copied from the forum into Word documents, and each thread constituted a separate document. Threads were chosen on the basis of the research objectives, resulting in topics such as “The service user’s sexual life” (started 2004, ended 2010, total of 26 posts), “Help with everything?” (2003, four posts), “Help with games and role play?” (2005, 45 posts), “Where do you turn to? (about assisting in the sexual act)” (2010, seven posts), and “Confidentiality and service user exposing assistant to telephone sex” (2011, 48 posts). The data were then manually analyzed. Data from interviews and the forum were analyzed in the same way, even though there are apparent differences, as referred to earlier. Furthermore, there has been no valuing of the data based on its origin. However, by spelling out the origin of the extracts in the article, as well as explaining the context more carefully when needed, confusion is sought to be avoided. Initially, 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 (Patton, 2002). As is usual in qualitative analyses, thematic clusters as well as variations in data have been highlighted (Patton, 2002). Situations described to be of sexual character were identified, thereafter assistants’ strategies for dealing with them were analyzed with the help of the concept of discretion. The conceptual framework of analysis was norm-critical with special focus on power dimensions such as disability, professionalism, and gender. Some interviewees had never experienced sexual facilitation and their answers may therefore be interpreted as speculative, but nonetheless interesting, since accounts of personal thoughts, values, and norms are seen as highly influential in professional practice, regardless of the actions per se (Hulko, 2009). The focus of analysis is therefore on how personal assistants manage their discretion in terms of strategies for dealing with sexual facilitation. First, a strategy of exclusionary practices will be discussed, according to which assistants choose not to acknowledge sexual facilitation as viable at all. Second, a strategy of gendered practices will be discussed, by which assistants use their discretion differently depending on the service user’s gender. Third, a strategy is discussed according to which assistants account for their decisions on the grounds of factors outside their responsibility (according to their own understanding). As often in qualitative research, the categories are of ideal types since they are the researcher’s constructions, and hence there may be differences within a category as well as similarities between categories. However, the structure was kept for the sake of highlighting certain thematic dimensions of the data that were found to be of analytical importance in light of previous studies and chosen theoretical perspectives, as will be further discussed in the final section of the article.

Ethical considerations

The quotes have been translated from Swedish to English, and hence they are not always literal. However, since the analysis does not focus on linguistics, the aim has been to keep their meaning intact. The translation also works to hinder the possibility of recognition, as well as easy access to original quotes on the forum through search engines. All names, aliases, workplaces, and other identifiers were changed to minimize the risk of recognition of both the assistants and service users referred to. However, there might be ethical issues with this kind of forum. The personal assistants sometimes share rather intimate and personal details about the service users they work with, and even though this information is depersonalized it can be questioned whether or not the service users would find it acceptable if it would come to their knowledge. However, the same type of detailed information was shared by the personal assistants in interviews, with or without the knowledge of the service users concerned. In order to protect the persons indirectly involved, the focus of analysis has been on the personal assistants’ thoughts and actions rather than on the specificities of the service users involved; thus delicate information has been left out.

THE SILENCE OF SEXUALITY

When asking the interviewed personal assistants if they had discussed sexual facilitation in the workplace, some of the answers were: “No, this is the first time I’ve talked about it” and “We’ve tried to bring it up but it felt so taboo.” Some had reflected on it before, while it was a new subject to others. The burden of discretion becomes evident, as well as its strength (Molander & Grimen, 2010). One of the interviewees said that in discussions about working conditions “the topic of sexuality came up from time to time, but it’s something that [the company] wants to back away from, they don’t dare handle it […] if you don’t talk about it, it doesn’t exist”. She recalls that she had tried to create a policy on sexual facilitation, but that it had been “forgotten.” As some other interviewees have mentioned as well, she would like to have instructions on how sexual facilitation should be dealt with in order to form awareness, preparedness and security in the assistant role. Turning to the forum, members seem to have similar experiences of the silence surrounding sexual facilitation, as can be seen in the titles of the discussion threads referred to earlier. One of the consequences of this silence is that assistants’ discretion in how to manage sexual facilitation is vast. Different aspects of this discretion will be analyzed in the following sections.

Strategies of exclusion

Apart from different aspects of sexuality being discussed within different topics on the forum, there are in fact some threads with the specific aim of discussing sexual facilitation. They often start with the following questions:

How do you handle it if a service user asks about assistance in sexual situations? I know there’s no law saying you have to [execute sexual facilitation], but how do you handle it? What have others done? Are there any guidelines?. (Forum)

This shows one of the particularly vulnerable factors of assistance work in relation to sexual facilitation: namely that assistants have limited knowledge of how these situations are to be handled according to laws, policies, or colleagues, often combined with the assistant working alone. Other threads were more specific to certain situations, for instance assistance with masturbation, BDSM (bondage, discipline, sadism, masochism) and role-playing, or accompanying the service user to clubs with the aim of finding a sexual partner for the night. What was common in these discussions was the need to distinguish between what counts as a sexual situation or act, and what does not, and like in many forums the discussions covered a wide range of opinions. For example, some assistants compare putting on a condom with putting on a uridome (male urine disposal, resembling a condom) and thus do not experience it as troubling. Others experience such situations as hard to handle to begin with, and are therefore reluctant to “take the next step” to sexual facilitation. Consequently, what assistants defined as sexual in the first place becomes influential in their understanding and handling of sexual facilitation in practice. The normative ways of engaging in sexual activity, as often framed heteronormatively in society (Rubin, 1984), may therefore be the first that comes to mind in the discussions among the assistants. For example, in one thread the discussion concerned whether or not it would be morally acceptable to assist the service user in viewing online pornography. One member wrote, “I’m pretty sure you can decline such activity with reference to work environmental laws,” while another member wrote, “You can never deny helping the service user browse porn sites, he has the right to have that as an interest in the same way as healthy men play around online.” Another theme concerned the possibility for the service users to engage in sexual activity on their own, and consequently, how much effort the personal assistant has to put into the facilitation part. This was often related to the type of impairment, for example not being able to move one’s arms to reach the genitalia, in which case it is seen as more acceptable to sexually facilitate than if the service user is able to do it her/himself. This argument is related to the aims of the Swedish rights law, which states that assistants are to assist with those things the service user is not able to do due to disability. However, other assistants saw sexual activity as a completely different phenomenon, and hence not within the framework of personal assistance services:

Yes, most people have sexual needs, but that doesn’t mean they have the right to sex or someone else helping them with it. […] Sex is a need but not as strong as food, ‘cause if we don’t eat we die. (Forum)

The quote above can be interpreted as the assistant being able to lean on a certain conception of sexuality as something extra in life, not a basic need that personal assistants are to help with according to the legal definition (Proposition, 1992/93, p. 159). The assistant hence uses her discretion in a way that suits her values regarding how service users should live their lives, regardless of the service users’ own opinions, manifesting the arbitrariness of discretional judgment in a normative context, as well as the power that lies in favor of the assistant in such decision making. She has decided beforehand, based on a personal understanding of sexual needs, that she would refuse to sexually facilitate someone because of the nature of the sexual needs. Assistants’ strategies for managing this strong discretion are most probably different than in situations of, for instance, when and how service users want to eat or shower—which is not strange, as sexual activity is a much more value-laden and feeling-evoking situation than a dinner, for example. It would therefore be fairer to compare sexual facilitation to, for example, facilitation of a person’s substance abuse, something that is also fraught with ethical and moral dilemmas in relation to self-determination, integrity and autonomy, as some of the personal assistants have discussed in both interviews and forum discussions. There are apparently certain normative values surrounding the different life domains of service users, which are consequently handled differently by different assistants. This strategy seems to be a way of defining the work of an assistant by simply excluding sexual facilitation on the grounds of the nature of sexuality. However, this is not done in mutual discussion with the concerned service users or with managers, which is apparent in the following quote as well:

How do you regard service users’ possibilities to engage in sexual activity in their daily lives with assistance? (Researcher)
Sex life hasn’t been an issue. They’ve all been very disabled. (Interviewee).

This answer is an example of how the concept of disability is closely related to illness, in the sense of entailing a perceived impossibility to be able to engage in sexual activity, a construction that previous research on sexuality and disability has reproduced in studies focusing on the sexual “dysfunctions” in the disabled body, on the grounds of able-bodied norms, normative sexuality and heteronormativity (Shuttleworth, 2010). And even if it is true, as some impairments or illnesses may in fact prevent a person from enjoying or wanting to engage in sexual activity, the question remains as to the grounds on which the assistant has made this judgment. The informant’s view on what sexuality entails can therefore be understood as grounded in normative sexuality, and this view guides her willingness to assist with, or even her ability to conceive of a need at all for, sexual facilitation. Hence, it is simply excluded from the concept of personal assistance services and not reflected upon, or simply denied. This discretionary strategy seems to be permeated by prevailing norms of disabled people’s sexual lives as being possible to exclude without their approval. This silence surrounding sexual facilitation compared to other life domains can be interpreted as a delegitimization of service users’ sexual expression, and can be as strong a method of oppression as direct actions (Foucault 1990). However, it can also be interpreted as a way of respecting service users’ integrity and privacy. However, unless there is a discussion it is hard to determine the cause. Another statement makes evident the preferred framework of sexual activity:

It’s so hard with these boundaries. I think if I worked with a partnered youth I’d definitely help with getting them adjusted in bed, but afterwards I wouldn’t want to be present. And of course also having an open attitude. But then to perform an act I’d be uncomfortable with, helping with masturbation or such ... In that case I can help with handing over aids and then leave the room, that’s different, ‘cause I don’t become a sexual object or the one performing a sexual act. I think it depends on your security in your own sexuality, because you feel like it gets too intimate. (Interview)

In this example, the assistant’s own “security” in her sexuality and the character of the sexual act are factors used to explain the decision to exclude sexual facilitation. The first factor, which could be seen as a psychological one, is connected to fears of being regarded as the object of sexual desire in the situation as well, which of course can be imagined to be hard to define. It seems as though this fear is also related to relational aspects, as it is considered easier to assist a couple than a single person, as the desire might be easier to determine in the former instance. However, this can also be interpreted from a norm-critical perspective, pointing to the taken-for-granted paired sexual act rather than as two or more people being involved. As other assistants have answered, sexuality is simply too complex to deal with within the framework of personal assistance services, and is hence rather left untouched upon. It is also evident that the different forms of sexual assistance are treated differently, as most assistants can only imagine assisting up until preparations for engaging in sexual activity but not beyond. However, different assistants have different boundaries, pointing to the individuality of assistance services not only on the basis of the service user. This individuality can have its basis in gender roles as well, as will be discussed in the next section.

Gendered strategies

The current situation of personal assistance work in general, highly populated by women, which is also evident in the group of informants in this study, points to certain gendered implications of discretionary strategies. The following personal assistant gives an example of how she usually handles the encounter with service users’ sexuality:

My way of showing that I’m open-minded is for example when showering [the service user] and he has an erection, I’ve said like, “I see there’s life in you!” or something else funny or stupid – in any case showing that I don’t get scared or offended. […] Or commenting on the porn movies on his bedside table, maybe something about the girls looking nice. (Interview)

Firstly, it is interesting to note that the personal assistant frames these situations as of sexual character, regardless of the service user’s lack of expressing such thoughts. It is understood as such by the assistant merely because there is an erect penis, even though it is generally acknowledged that this does not necessarily entail sexual expression, and because of pornographic movies lying on the bedside table, also uncommented by the service user. The tendency to notice (expressions of) male sexuality can therefore be seen as prevalent in this situation, regardless of disability, as (expressions of) male sexuality is generally more often accepted as “natural” and as something requiring attention (Jeffreys, 2008). Second, the assistant argues that she is an open-minded person, with a laid-back attitude toward sexuality and that she therefore easily handles these kinds of situations. This attitude may well be experienced as respectful by the service user, since humor is a common strategy for dealing with difficult situations and is experienced positively by both service users and staff (Williams, Ponting, & Ford, 2009). In the same manner, it could be thought of as a respectful and open attitude in line with the first step of “adequate” sexual facilitation (Earle, 1999). However, what the assistant perceives as open-mindedness may well be experienced by the service user as an offensive joke, as jokes may “effectively work to disturb the positions between [service user and assistant] and to enact an alternative reality” (Moser, 2006, p. 2; O’Brien & Kendall, 2003). From another perspective, the mere mentioning of sexuality may also be interpreted as either negative and as an invasion of privacy, or as positive and empowering. Either way, how the discretion of sexual facilitation is handled may have a greater impact on the service users’ vulnerable position than the discretion concerning other activities of daily living. Furthermore, the discretion is based on preconceptions of the meaning of a situation that is not negotiated between service user and assistant, giving power to the assistant to define it, highlighting the power of discretion in the assistant’s favor. This is done in a similar way as was discussed in strategies of exclusion. In contrast, the same assistant describes a situation when she was having a talk with a female service user, who suddenly started talking about how lonely she felt, and later implied a wish for sexual facilitation:

I had a female service user who once said to me, while looking deep into my eyes: “My friend, she does everything for me”, and she looked at me for a long time when she said “everything”, and it really made me feel uncomfortable. I just ignored it. (Interview)

The personal assistant continues to reflect on this situation, saying she could never imagine assisting this service user with masturbation, which she was certain of was implied. Her choice to treat this verbal expression with silence, instead of with a joke as in the situation with a male service user, can be understood as a gendered strategy of discretion. Men’s expressions of sexuality are to be treated as something funny with “an open mind,” while women’s sexual expressions are uncomfortable and should be treated with silence.

It is also important to stress the influence of a heterosexual framework as there are also other experiences related to gender, for example including difficulties experienced due to sexual orientation, from the personal assistant’s perspective:

It took a while before I felt comfortable telling her [that I’m a lesbian]. ‘Cause I had a lot of thoughts, like, oh no …. Will she suddenly feel uncomfortable with me showering her? (Interview)

The personal assistant connects sexual orientation to sexuality, and reflects on how her desire for women might be experienced by the service user as uncomfortable in intimate situations. Her discrete handling of the discretion in this instance also points to the female role as subordinate; the assistant’s sexuality may be hidden because of a sexual orientation that is not expected of women. She also seems to take for granted that the service user does not feel uncomfortable in intimate situations with heterosexual women, or men for that matter. Other interviewees have expressed similar views, for example a young man who chooses not to work with young girls because he is afraid they will develop feelings for him and feels he would then have a hard time being professional, not only in intimate situations, but also because of the risk of being accused of abuse if he rejects their invitations. His fear is based on a heterosexual understanding of the girls’ possible desire toward him as a man. It also seems as if he does not have a fear that he himself will fall in love with the service users, which can be interpreted in terms of both attitudes (a non-disabled person falling in love with a disabled person) and power relations (an assistant falling in love with a service user). Another young male interviewee says,

Of course, it’s easier to work with men, you understand much easier what can be sensitive and so on, and it’s easier to joke around about stuff.

The different ways of acting toward women and men were discussed on the forum as well, in a thread titled “Is it sexual harassment?”:

A female personal assistant may experience a male service user’s sexual expression as intrusive and threatening. […] The tension between man and woman that can easily appear … when you least expect it. A masturbating female service user doesn’t bother me all that much. She would probably lie on a little towel and deal with it very, very discretely. (Forum)

Some of the other forum users agreed, while others disagreed, on the stereotypical portrayal of women and men. This is also a contrasting example to that of the other female assistant feeling provoked by her female service user but not by the male one. Either way, what becomes evident are the prevailing notions of feminine and masculine from a rather biological understanding, at the same time suggesting implications for gendered sexual expressions. The patriarchal dimensions of power in general society are hence evident in this context as well, highlighting a need for a gendered analysis of disability and sexuality (Begum, 1992; Jeffreys, 2008; Zitzelsberger, 2005). Thus, regardless of whether personal assistants account for their decisions on the basis of gender as being a problem, their personal values as well as societal norms concerning these concepts serve as guidance, with the possible consequence that service users have different possibilities for sexual expression depending on their gender and/or sexual orienting.

Third-party decision making

In some situations, personal assistants do not make decisions based on their own discretionary judgment, but take into account—or fully base their decisions on—factors outside their perceived responsibilities. In the following example from a thread initiated by a new service user, asking what he could demand in terms of sexual facilitation, one personal assistant answered:

I’ve worked as an assistant for a service user who had very natural needs together with her husband, I saw absolutely nothing strange or repulsive about that. /…/ She and I had a code and when she showed it to me I just “disappeared into a wall” and stayed away. It worked well and the service user was very happy. (Forum)

In this example, the personal assistant relies on the service user’s demands regarding how the situation should be handled. When assistants experience that their relationship with service users is grounded on a sharing of equal values, sexual situations may become easier to handle. There seems to have been an adequate amount of communication between personal assistant and service user in order to make this situation possible, whereby both parties seemed content with their roles. The scope of discretion in this instance was decreased in favor of directions from the service user, made possible because of the two parties having the same ideas about how the situation should be dealt with and the situational context of making the request possible. Furthermore, the discourse of sexuality as something natural is visible once again, and it is contrasted against “strange or repulsive.” One could also argue that it is the “naturalness” of certain sexual engagement according to normative ideals concerning monogamy that is thought of, in contrast to helping a single person, as discussed in previous sections. The normative views of what sexual activity constitutes seem to guide the personal assistants in deciding what type of assistance is appropriate, even if it is within the boundaries of directions from the service user. The idea of sexuality as a biological concept implies the need to take account of it, like any other need (in contrast with the aforementioned example where sexuality was regarded as something extra besides the basic needs of feeding and sleeping). The following personal assistant posting in a thread titled “Sexual assistance” used a similar strategy:

For one of my service users we call a girl who comes and has a moment together with him, when he wants to. It works great, the service user’s content and the girl’s really nice and lively and happy, she has several customers with disabilities who she visits. She’s had my service user as a customer for three years. (Forum)

This personal assistant lets her discretion be limited by directions from the service user, which are in line with her own conceptions of an “acceptable” sexual life, in the same way as in the former example. The difference here is that the way of facilitation is illegal (the purchase of sexual favors is illegal in Sweden). This could easily have been a legitimate argument for not accepting the demand for sexual facilitation on the basis of third-party factors (the law). Instead, the mutual personal values were the seminal ones. However, several other forum members questioned the personal assistant’s judgment. When observing the discussion it became clear that most of the forum users were in favor of the current law, and hence, rejected the idea of sexual facilitation through prostitution:

You’re joking, right? You can’t seriously mean that there’s a woman visiting different service user “being really nice”! And that the assistants are making the calls? (Forum)

Personal assistants’ discretion may be strong, but it seems as though their judgment to act in certain ways according to their responsibility to manage this discretion may be questioned afterwards by colleagues within the framework of normative judgments. It is apparent how the prevailing Swedish discourse on what sexuality constitutes, which excludes sexuality in a relationship consisting of (monetarily) unequal parties, has an influence on assistants’ moral reasoning regarding how service users’ sexual needs can be met. At the same time, it is visible how the personal assistant in question has another view on this issue, and in agreement with the service user, chooses to act according to a contesting norm even if it is illegal. From a professional point of view, the personal assistant’s decision to assist the service user in calling a prostitute may therefore be seen as adequate, as this is done in agreement with the service user and in line with the independent-living approach (see earlier discussion), and both parties feel comfortable with this way of handling the situation. However, moral and ethical perspectives from outside the concerned parties have an influence as well, making evident what was earlier described as the broader moral context (Tronto, 1993), which in turn is tied to societal views and, in this instance, also laws. Relating it further to the aims of Swedish rights legislation—to live autonomously, make your own decisions and lead a good life like anyone else—it seems as though this can only be done within a certain personal assistance framework. Living like anyone else would imply the individual risk a person takes when purchasing sexual services. Nevertheless, in personal assistance services, the service user cannot make these decisions from an entirely individual standpoint in the same way, as relational and legal aspects of the work are influential. This manifests how service users’ lives are lived within the framework of human service organizations, highlighting dimensions of discrete power. It is only if the personal assistant agrees with the service user’s demands that it is possible to fully have her/his needs realized.

Other factors discussed by personal assistants that are in line with this type of strategy are working conditions:

If I were to work full time as an assistant and I were working with someone where there were occurrences of anything sexual, I’d probably say something. But I think few assistants dare to. You don’t have that right and you’re not in a position to make demands. If the assistant refuses then you don’t have to keep them, there’s always someone else. They [service users] can’t discriminate against you, the line is very far to cross. (Interview)

In this situation, the personal assistant experiences that her discretion is limited by the specific working conditions that part-time employed personal assistants may have. These working conditions are experienced as creating vulnerability in her professional role, further strengthened by the legal aspects of the Swedish rights-based law, protecting and empowering service users to a larger extent than the employees from certain perspectives. She therefore chose not to bring up the situation for discussion with her colleagues or manager, which she says she otherwise would have done. Other personal assistants have also mentioned security as a factor, saying that if their manager ordered them to execute sexual facilitation, or if they received proper education in the matter, they would comply; however, not in a case in which they were totally unprepared. As mentioned earlier, the norms concerning how services should or should not be executed are framed within organizational morals, and for some personal assistants their managers are the face of these. These assistants hence limit their discretion with reference to managers’ responsibility. However, this is not a responsibility the managers have actively taken, and neither is it an active disclaimer by the assistants that has come from discussions with either service users or managers. The limitation of discretion is instead based on the personal assistants’ own perception of the scope of their discretion. These different examples all point to factors that assistants experience as being outside their responsibility, control or scope of decision making. Justification is not made on the grounds of the individuality of the service user but on that of the personal assistant, who feels insecure, insufficiently trained or not clearly enough delegated from the top. Power lies in the choice not to act as well, or in other words, in the discretion of power.

THE DISCRETION OF SEXUALITY

In conclusion, what this research might demonstrate are the different ways in which sexual facilitation can be understood and handled by personal assistants, and the implications that this might have on service users’ possibilities to be treated respectfully in their different ways of expressing or daring and wanting to express their sexuality. Professional practices, regardless of their explicitness of sexual awareness or not, have influence either way (Burrell & Hearn, 1989). Some key issues based on the empirical data will now be discussed.

First, the analysis shows the different ways in which the personal assistants conceptualize “sexuality”, namely the ways they handle service users’ sexual expressions and interpret certain situations as sexual. Following the above discussions, this can be understood in functionalist terms. The functionalist view concerns issues such as what is considered normal, what engaging in sexual activity entails and how, why, and with whom it is acceptable to do this (Lewin, 2008). Furthermore, it entails an understanding of sexual behavior as serving a function in the given context. These notions can be understood in terms of sexual scripts (Gagnon & Simon, 2005), namely how our understandings of sexuality and sexual conduct are influenced by our personal ideas as well as our social relations and societal discourses (Gagnon & Simon, 2005). In personal assistance, a context in which the services are executed in a person’s home, guided by certain professional understandings but with limited regulation, sexual facilitation becomes functional in a highly individualized way. Every personal assistant handles it according to their personal views around sexuality, as well as on their own functions as assistants. The discretion of sexual facilitation in this context is hence vast, and takes various forms depending on the specific relationship between personal assistant and service user as well as the specific situation. It is therefore difficult to conclude, or predetermine, who does what, for whom, how, and why or why not. What is visible in this material, however, is the reluctance to sexually facilitate in a comprehensive manner, i.e. where the facilitation would entail more intimate involvement in the service user’s sexual conduct. Molander and Grimen (2010) argue that understanding why individuals arrive at different conclusions after thorough reasoning requires that every individual become conscious about her/his burdens of judgment. With regard to sexuality this would require increased resources, as personal assistants today have limited possibilities for activities such as introduction, qualified supervision and professional guidelines. The most probable explanations are the societal understanding of sexual activities as something private, and hence the possible risk of destroying the professional relationship by including such services, as discussed by some personal assistants in this study as well as in previous studies on service users (Bahner, 2012; Browne & Russell, 2005; Morris, 1993; Sakellariou, 2006; Shakespeare et al., 1996).

Second, the analysis shows the different outcomes of this view, which is largely permeated by societal values of heteronormative ideology of sexuality and gender, which may be seen as self evident regarding the mainstream societal views on sexuality and disability, as shown by disability scholars studying gender and sexuality issues (cf. Fawcett, 2000; McRuer, 2006; Morris, 1996; Shakespeare, 2000). Assistants handle female and male, single and coupled service users’ sexual expressions or wishes for sexual facilitation differently, if at all. This shows why gender may be a relevant aspect of sexuality to analyze, related to both disability (Zitzelsberger, 2005) and professionalism (Sörensdotter, 2008). From the service users’ point of view, it is possible to see a that male sexuality is more manifest than female sexuality in this study. The general patriarchal structures in society may therefore be regarded as evident in this context as well, making it relevant to question whether sexual facilitation is really an issue for service users in general, or actually mostly for men (cf. Jeffreys, 2008; Kulick, 2012; Sanders, 2007). From the personal assistants’ point of view, the work carries low status, and sexual facilitation is also discussed in relation to the poor working conditions and their precarious professional positions. Some express a fear of being thought of as a prostitute if they include sexual facilitation in the services. Some personal assistants’ unwillingness to execute facilitated sex, or to even discuss it, can therefore be understood in terms of counter-power (Foucault, 1990). The constant struggle against the feminized and downgrading status of their work may therefore be an important factor to consider when analyzing their discretionary practices. However, as disabled people on the structural level have inferior opportunities to those of others in society, among them in the sexual arena, some might require more support and acknowledgment in order to live fulfilling sexual lives (Shuttleworth, 2010). Hence, taken-for-granted identities and power advantages are hard to account for, and instead multiple possibilities for vulnerable positions for the parties involved in each situation and relation occur (Burghardt, 2013).

Third, personal assistance work has not been previously analyzed with regards to sexual facilitation in relation to the characteristic working conditions described in this article. Even though assistants often have limited possibilities to influence their work they seem to have strong influence over the services, as managers in this study are seldom present and are hence unable to control the work performed in practice. In this sense, personal assistants’ discretion is different from that described by Lipsky (2010) as strong managerial control. This has been critiqued by others as well in an attempt to target the attention to the street-level bureaucrats’ professionalism as strong regulators of their discretion (Evans, 2011). However, personal assistants lack the type of professionalism associated with “real” professions, such as a common educational background and a set of ethical codes of conduct. How, then, is it possible to understand the amount of discretion given to personal assistants and the consequences this has on dealing with sexual facilitation? The common relationship between street-level bureaucrat and client is overthrown in personal assistance services through an increase in the authority of the service user, reducing the professional autonomy of the assistant. The great amount of freedom, then, is based on an understanding of service users being able to direct the services in their own way, giving them not only rights to services but at the same time obligations to manage them as well, which requires them to have a certain capacity (Gough, 1994). However, it seems as though value-laden life domains such as sexuality, in contrast to “basic needs” such as eating, communicating, and performing daily hygiene, are of decreased possibility to be managed by the service user, instead giving increased authority to the assistant, whose personal values are allowed to direct the discretion to a greater extent. The framework of the human service organization, with limited resources to fulfil all service users’ needs, may therefore lead to an exclusion of sexual needs, making it harder for service users to argue for more, as they should be thankful for what they already receive (Lipsky, 2010). As both some service users in former studies (Bahner, 2012; Browne & Russell, 2005) and some assistants in this study experience there to be a taboo against discussing sexual facilitation with colleagues and managers, it is probable that it does not comes to the fore as a demand to the same extent as other types of services. It is perhaps therefore possible to speak of managerial control after all, although it operates in an indirect and subtle way in accordance with new management practices (Ellis, 2011). Either way, it is evident that it leads to personal assistants exercising their discretion based on personal values rather than on professional ethics or service users’ wishes—or more accurately, that personal values and professional ethics influence each other, since there is no formal professional framework to begin with. The power of discretion could therefore be seen as permeated by different dimensions of power hierarchies. In this article, highlighting the intersection of disability, sexuality, professionalism and gender, sheds light on the discrete ways that power positions can be performed. How to balance this dilemma is one of the remaining issues for the further study.

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About The Author

Julia Bahner
Department of social work, University of Gothenburg
Sweden

PhD student

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