Abstract

This exploratory study examined the attitudes and experiences of a small sample of direct care workers' experiences of addressing the sexual expression and practices of their clients with intellectual disabilities. Drawing on in-depth interviews with direct care workers in Alberta, Canada, we use Foucault's work to examine the way power is exercised through organizational policies, personal values, and employment contexts. Altogether, the accounts of direct care workers seem to illuminate a culture that commonly sees disability and sexuality as antithetical and a topic to be avoided for fear of reprisal.


Introduction

While greater attention has been paid to the romantic and sexual lives of people with intellectual disabilities (ID), the intersection of intellectual disability and sexuality remains a taboo topic (Bernert & Ogletree, 2013; Löfgren-Mårtenson, 2004), including among parents and staff members (Evans et al., 2009; Young, Gore & McCarthy, 2012). Contradictory dominant constructions of sexualities among people with ID contribute to their de-sexualization, control, and surveillance (Feely, 2016). On one hand, people with ID are still commonly viewed as child-like and innocent, and thus, in need of protection and supervision (Swango-Wilson, 2009; Feely, 2016). On the other hand, people with ID are perceived as having 'excessive' sexualities and being hypersexual and unable to make decisions about sexuality and sexual expression (Gill, 2015; Gomez, 2012). As noted in the United Nations Convention on the Rights of Persons with Disabilities, disabled people are entitled to rights concerning sexual health, safety, partnering, parenting, and sex education (Frawley & Wilson, 2016; Shakespeare & Richardson, 2018). Yet, people with ID continue to face innumerable barriers to sexual rights and sexual expression (Abbott & Howarth, 2007; Björnsdóttir, Stefánsdóttir, and Stefánsdóttir, 2017). These challenges include, for example, lack of privacy to be romantic/sexual (Healy et al., 2009; Kelly et al., 2009), lack of access to sexual education (Healy et al., 2009; Murphy & O'Callaghan, 2004), being discouraged from remaining sexual by people around them (Löfgren-Mårtenson, 2004), amongst others.

Service providers and direct care workers (DCWs) are intimately connected with maintaining, facilitating, and upholding those rights. However, this role can be complicated by care providers' attitudes toward the sexuality and sexual expression of people with ID. Studies suggest a general apprehension among DCWs to engage in conversations regarding sexuality with the people they support (Cuskelly & Bryde, 2004; Hamilton, 2009). This is partly due to lacking or unclear organizational policies and training focused on the topic of sexuality (Abbott & Howarth, 2007). Studies have also noted that when faced with a situation where people with ID discuss or express interest in sexual relationships, workers' responses tend to evoke common cultural perceptions of people with ID as lacking romantic and sexual interests (Kim, 2011). Not only that, but DCWs also engage in different forms of "boundary work" (Lamont & Molnár, 2002) as they draw and negotiate symbolic boundaries between 'acceptable' and 'unacceptable' forms and expressions of sexuality among the people they support. By extension, some workers view sexual expression and engaging in sex or romantic relationships as 'inappropriate' for people with ID or to be prohibited altogether (Abbott & Howarth, 2007; Grieve et al., 2009).

The purpose of this exploratory study conducted by the first author was primarily to understand the attitudes and experiences of a small group of people with ID in Alberta, Canada, in regard to their sexual expression and practices, and inquire whether and how their DCWs had affected their expressions and practices. In addition, this study included DCWs to understand their attitudes and practices when it comes to the sexual expression and practices of their clients 1 with ID. This paper will focus on the latter considering how DCWs from non-profit organizations and service agencies can play a significant role in the lives of people with ID and their families by providing front-line care, and thus, sometimes participating in intimate parts of the lives of people with ID, being a source of information and support, and facilitating opportunities for community participation (McDaniels & Fleming, 2018). Thus, it is important to understand the influence of these workers in the lives of people with ID, either by supporting or preventing sexual expression and practices. In this paper, we argue that organizational policies and practices, along with DCWs' own sexual subjectivities and values, can serve as mechanisms to (intentionally or unintentionally) promote practices that continue to prevent and/or discourage people with ID from learning about sexuality and remaining sexual.

This paper begins with an overview of the literature on disability, sexuality, and DCWs' influence in the sexual expression and practices of people with ID. Then, we introduce our theoretical framework. This is followed by an introduction of the study participants and an exploration of the research findings. The paper concludes with a discussion of the findings and suggestions for future research.

Literature Review

Research Context

This exploratory study was located in Alberta, a province in Canada with a long history of eugenics laws and practices particularly targeted at people with ID (McCavitt, 2013). Alberta was responsible for 90% of more than 2,800 cases of involuntary sterilization of disabled people in Canada between 1928 and 1972 (Grekul, Krahn & Odynak, 2004; Moss, Stam & Kattevilder, 2013). Most notably, the Alberta Sexual Sterilization Act (1928) was created in an effort to eliminate sexual expression and pregnancy for people with disabilities. More explicitly, this Act was implemented with the intention of enacting "negative eugenics", also understood as the process of eliminating the reproduction of certain groups in society including poor, racialized communities, and disabled people (McCavitt, 2013). Important to note, this information is a shameful aspect of Canada's past and many efforts have been made to suppress this history (McCavitt, 2013). Without the activist work of Leilani Muir and other institutional survivors, these stories may have remained hidden from the larger public (Santinele Martino & Campbell, forthcoming). Leilani Muir won a legal case against the province for wrongful sterilization and confinement, receiving almost $1 million and a formal apology from the government of Alberta (Living Archives on Eugenics in Western Canada, 2013).

It is reasonable to say that such a long history of eugenics policies and practices continues to influence the experiences, knowledge, and expectations of people with ID, which demonstrates the historical tenacity of discourses that deem people with ID to be 'unfit' for sexual expression or parenting (Servais, 2006). Some scholars have indeed shed light on newgenics practices, which operate in more covert ways in terms of discouraging and blocking opportunities for sexual expression, reproduction, and parenting among people with ID (e.g., Eugenics to Newgenics, 2018; Living Archives, 2018). Newgenics "moves beyond biological and medical interventions, to encompass systematic barriers to education, services, policy and supports for disabled people in terms of sexuality and reproduction" (Eugenics to Newgenics, 2018).

Power Relations and Precarity

The relationships between DCWs and people with ID, Goble (1999) suggests, might "be more personalised and humanised than in older institutional settings, but they are still profoundly unequal" (p. 458). The person-centered approach to service delivery, which aims to shift decision-making power from professionals to individuals with disabilities, has become, at least in theory, the most common among non-profit organizations and service agencies (Parley, 2001). However, relationships with authority figures remain quite unequal (Servais, 2006).

Some people with ID spend a significant amount of time with their DCW, forming important and influential relationships. Goble (1999), for instance, found that participants considered their support workers to be "physically, emotionally and politically central in their worlds" (p.457). The participants, however, had "little knowledge of the official designations of staff" or their "officially designated roles," and even though workers were seen as "powerful and authoritative," participants did not understand "the source of and rationale for this power and authority" (Goble, 1999, p.457). The author suggests that these particular relations between workers and their clients demonstrate the disempowerment of disabled people who are sometimes dependent on their workers to access services and other forms of support, and rarely have the opportunity to establish their own needs and wants. Considering the close interaction between clients and DCW across different settings, "a considerable proportion of [clients with disabilities'] sexual knowledge will be obtained through the staff" (Meaney-Tavares & Gavidia-Payne, 2012, p.269). Also, romantic and sexual relationships among people with ID can be highly supervised (Winges-Yanez, 2014), and DCWs can sometimes be the ones responsible for engaging in that supervision.

Given the substantial impact a DCW can have on a client's mental, physical, and emotional well-being, it is worthwhile to consider the role of a DCW in people with ID's lives. In Canada, DCWs hold different capacities in their clients' lives from caregiving to advocacy (Li, 2004), which positions DCWs in direct contact with the most intimate and personal experiences of a client. As such, one would expect that DCWs should require a high level of training and supervisory support. Unfortunately, studies have reported that DCWs experience "[s]tressors resulting from heavy workloads […] and limited job autonomy" (Gray-Stanley & Muramtsu, 2011, p.1066) as well as a lack of supervisory training and support (Li, 2004). Studies have also suggested that these factors can often lead to burnout (Vasso, Nankervis, Skerry & Lante, 2013) and high turnover (Bogenschutz, Nord & Hewitt, 2015) among DCWs. In particular, high rates of burnout and turnover have negative impacts on all those involved in service provision, from the DCW to the organization, and most importantly, clients with ID.

This data points to a broader crisis in the social care sector resulting from decreased service funding for clients with disabilities (Campbell, 2008). Campbell (2008) explains how provincial funding cuts have the result of putting the health and safety of both care workers and clients at risk. The impacts of these factors are no better expressed than in a foreword by two clients regarding DCW turnover called Good Staff, Bad Staff, No Staff at All (Li, 2004). Within this community-academic report, clients with ID explain the importance of properly trained, well paid, committed DCWs:

"When staff whom we really like are hired and then leave, it makes us feel lost and angry. It feels like we lose a friend and companion. There are a lot of past staff whom we really liked, but haven't seen in years and now miss. It seems like we just get to know them, and then they give up on us and quit. Then we have to start all over. Sometimes it makes us feel violated because they say they really care and are interested in our lives, but then they leave….We think that it is really important that agencies and government do whatever they can to help people with disabilities, find staff who understand us, want to work for us, and are willing to stick by us. We also think that our staff need to get paid more money and be respected by society" (Li, 2004, p.2).

Considering the important role of DCWs in clients with ID's lives and the immense power imbued in this role, it is vital to examine the role of DCWs' personally held beliefs and the ways they are expressed in work with clients, which we attend to in the next section.

Direct Care Workers' Attitudes and Perspectives towards Sexuality

There is a body of literature examining how different social locations, such as age, gender, and religious affiliation, can have an impact on DCWs' perceptions and attitudes toward the sexuality and sexual expression of people with ID (Abbot & Howarth, 2007; Cuskelly & Bryde, 2004; Grieve et al., 2009; Saxe & Flanagan, 2013). The findings among these studies have, at times, been contradictory (Pebdani, 2016). Saxe and Flanagan (2013) have noted age and education as factors which impact responses with younger, more educated support workers holding more liberal views of sexual expression. Religious affiliations were also found to correspond with more conservative responses from DCWs in a number of studies (Christian, Stinson & Dotson, 2001; Lafferty et al., 2012; Saxe & Flanagan, 2013). Yet, there are few studies addressing how organizations with religious affiliations can shape the practices of workers (Feely, 2016). This could act as a barrier to clients' sexual expression and sexual activity, especially when women with ID seek to exercise their reproductive rights (Christian et al., 2001). Overall, we still do not know enough about whether and how these demographic characteristics shape the attitudes and practices of DCWs (Pebdani, 2016).

In contrast, the literature suggests some DCWs maintain generally positive attitudes towards sexual expression from clients with ID (Cuskelly & Bryde, 2004) but identify limitations to knowledge or general hesitancy to discuss the topic with clients (Abbott & Howarth, 2007). Workers cited limited knowledge of organizational or workplace policies (Banks, 2016), discomfort with the topic (Hamilton, 2009), and concern about discipline from their place of employment or clients' families (Abbot & Howarth, 2007). Some studies indicate training can have a positive impact on staff's attitudes towards the sexuality of people with ID (Pebdani, 2016). However, while many studies call for more training and education for DCWs, Lafferty and colleagues (2012) highlight the abundance of training materials and information available to DCWs who wish to be supportive of their clients' sexuality and sexual expression. As our findings suggest, in some cases, training alone is not sufficient, demonstrating the importance of considering workers' own sexual subjectivities as influencing their practice. As a contribution to this area of scholarship, our study takes an in-depth, nuanced consideration of a small group of DCWs' positionalities that highlights the complex intersection of workers' knowledge, values, and motivations within specific institutional contexts and how these interact to either promote or suppresses their ability to support the sexual expression of clients with ID.

Theoretical Framework

In this paper, we draw on Foucault's work on power, sexuality, and social control as a theoretical framework for examining the operations of power experienced by DCWs. By doing so, we intend to understand how power permeates these relations as well as the ways through which DCWs come to accept them. According to Foucault (2003), power permeates all social relations and comes into existence precisely when it is "exercised" in social relations through which subjects come to "structure the possible field of actions of others" (p.138), controlling, limiting, or enabling certain actions (Peers, 2012). For Foucault (1980), power should be understood as something that is capillary and that affects everyone:

Something which circulates, or as something which only functions in the form of a chain […] power is employed and exercised from a net-like organisation […] individuals are the vehicle of power, not its points of application (p.98).

Indeed, Foucault's (1978; 2003) model of power seemed to be manifested in the narratives of DCWs in this study who understood themselves to be a part of various local and trans-local social relations that commonly involved power struggles and that created opportunities or limited their practices. Rather than perceiving themselves as having power over the people they served, DCWs spoke about often feeling disempowered and introduced their own power struggles with other social actors (e.g., agency managers, parents of clients). Indeed, as Foucault (1978) has suggested, power is not simply top-down but, in fact, "power is everywhere" and "comes from everywhere" (p. 93).

We also draw on Foucault's insight that power is not always negative and repressive because, even though power can be repressive at times, it is also something that produces "reality, […] domains of objects and rituals of truth" (Foucault, 1977, p.194). In fact, even the most seemly constraining and oppressive operations of power can allow for new "forms of behaviour and events rather than simply curtailing freedom and constraining individuals" (Mills, 2003, p.36). For Foucault (1977), power, rather than ever negative and oppressive, can be productive and achieve unexpected results. That is to say that, power can be taken up and used, even by those who we think are "vulnerable," like people with ID. As Foucault (1978) has noted, "where there is power, there is resistance" (p. 95). There is, for Foucault, a productive "field of possibilities in which several ways of behaving, several reactions and diverse comportments, may be realized" (as cited in Weberman, 2000, p.256), and DCWs can resist through collective or individual, spontaneous or articulate, forms of action. Considering power as productive and always open for resistance allows us to see opportunities for DCWs to shift discourses and practices (Gilbert, 2003). Yet, what we found in this study is that institutional policy and contexts often engender a culture of silence and fear around discussions about sexuality to the extent that workers report a strong fear of getting into trouble, which limits their acts of resistance against dominant practices that constrained the sexual expression and practices of clients with ID.

Method

This exploratory study draws on qualitative in-depth interviews with six front-line DCWs 2 to understand their experiences and attitudes towards the sexual practices and expression of people with ID they are serving. 3 Recruitment strategies included calls for participation posted in public places as well as online notice boards, individual conversations, referrals from interviewees (snowball sampling), and pre-existing contacts in local agencies delivering services to people with ID. The interviews were conducted in a mutually agreeable location to allow participants to feel comfortable sharing their experiences, especially outside of their organizations to allow them to avoid concerns about possible employment consequences. The duration of these interviews ranged from 45 minutes to almost two hours.

After transcription, interviews were analyzed from a critical-constructionist framework using thematic analysis. The coding process was both "theory-driven," approaching the data with specific questions and a theoretical framework in mind, as well as "data-driven" with codes "depend[ing] on the data" itself (Braun & Clarke, 2006, p. 18). In interviews, participants talked about their experiences as they understood them in that particular moment, and those experiences were true for them. It was the interviewer's role to interact meaningfully with participants, actively listen to them, attempt to make sense of their reality, and provide an ethical representation and interpretation of their experiences. Moreover, a critical-constructionist framework recognizes how these 'truths' are indeed embedded in various power relations in which certain 'truths' are privileged over others, and it is important to bring these power relations into view to better understand them and open them to question (Mullaly & West, 2017).

The final stage of the coding process involved looking at the interviews for common themes and shared experiences among the participants. Thematic analysis, Braun and Clarke (2006) state, can be helpful in "identifying, analyzing, and reporting patterns (themes) within data" (p.6). Some of the themes that emerged from interviews with DCWs included, for example, the workers' own positionality as sexual beings and their influence in their practices related to the sexuality of their clients, which was either mentioned or implied by most of the participants as relevant to their practices. Because participants volunteered for the study, we acknowledge the potential limitations of self-selection bias as participants may have strong feelings about the topic. Therefore, we do not claim this sample is reflective of the broader population from which it is drawn but rather captures the unique experiences, positionalities and perspectives of those interviewed. While the sample was small, Braun and Clarke (2013) have noted, qualitative research is about "hav[ing] enough data to tell a rich story" (p.56). The purpose of this study was to delve into the complexities in the experiences and perspectives of a small sampling of DCWs, and create a compelling representation and interpretation of how these selected individuals make sense of the sexual expression and practices of people with ID. Instead of seeking to generalize findings from a specific small sample, we suggest that the findings in this research "may be transferred and may have meaning or relevance if applied to other individuals, contexts and situations" (Finlay, 2006).

Participants

This exploratory study included 5 women and 1 man 4 with ages ranging from 23 to 49 years. Important to note is the positionality of the participants when considering the impacts of their identities on their work with clients with ID. The DCWs had worked in non-profit organizations and service agencies delivering regular personal supports to individuals with ID, and they were willing to discuss their experiences and practices concerning the sexual expression and practices of their clients. Four participants identified as Canadians and White, while one identified as Southeast Asian, and one as Latin American. Three identified as heterosexual, one identified as gay, one as bisexual, and one as undeclared. When asked about their religious beliefs, two participants reported being agnostic, one identified as agnostic/atheist, one identified as Catholic, one as spiritually open-minded, and one mentioned not belonging to any religion. At the time of the interviews, three participants had concluded their bachelor's degree, two were still undergraduate students, and one was working on his master's degree. The selected participants included permanent and relief workers delivering overnight assistance at group homes, respite services to parents and caregivers, and supports to people with ID in their various activities in the community. These participants have worked as DCWs in different agencies for different amounts of time, from two months to 27 years.

The DCWs interviewed presented as a diverse group in regard to their job position, type of agency, motivation for being in the position, and number of years of work experience. These individuals were located at the front-line of disability service delivery, having around them other DCWs, as well as team leaders that linked them with the agency administration. In accordance with the literature, the participants had had little, if any, direct interaction with higher up agency administrators, usually relying solely on their team leaders for guidance and feedback (Ford et al., 2000). With the exception of Marina and Rose, who had been working in openly Christian-oriented organizations, the other participants reported working for ecumenical family-led organizations. The participants reported a variety of reasons for working as a DCW. These included having family members or friends with a disability and feeling committed to supporting other people with ID, being attracted by the flexible work hours that allowed them to simultaneously proceed with their college education, or seeing the position as a good temporary job opportunity that could provide some training for their actual future careers in health professions.

Next, the findings will highlight specific thematic areas identified with and across interviews. Emphasis is placed on the implication of institutional context on workers' readiness to discuss sex and sexuality with clients, practices DCWs engage in when these topics arise, and the role religious affiliation plays in shaping these individuals' workplace practices.

Findings

"I don't know if I can talk about that"

Because the literature has suggested that the presence of clear institutional policies and guidelines about sexuality can influence and guide the practices of these workers (Christian et al., 2001; Löfgren-Mårtenson, 2004, Ward et al., 2001), participants were asked about policies and guidelines at their organizations. Participants, however, were often hesitant about answering questions related to institutional policies and training. Paola, for instance, whispered: "I don't know if I can talk about that [nervous laughter] … I don't wanna talk about it." This hesitation in discussing institutional policies was not unique to Paola, as some other workers interviewed also chose not to talk about them. The circumspect responses of participants to seemingly straightforward questions about institutional policies and training indicate that power and a fear of "getting into trouble" colored their willingness to speak.

Most workers, instead, talked about having little knowledge about the policies and guidelines in place at their organizations, and often had a hard time recalling what was written into those policies. One can say that it might be the case that such organizational texts may not be as influential in the actual everyday practices of this small group of front-line workers as previously noted in the literature. For instance, when asked whether her organization had policies or guidelines related specifically to sexuality, Susan said: "well, first, I don't think so, but secondly, I prefer not to discuss the company policy […] yeah, and I don't pay too much attention to the policy." Similarly, Rose reported, "sure, there was a policy [on sexuality], but it wasn't nothing that has stayed in my brain to recall."

This seems to suggest that some workers might perceive themselves as having at least some autonomy to make their own decisions when addressing some situations related to sexual expression and practices with their clients. Drawing on Foucault's concept of power as discussed earlier, there was a clear articulation of DCWs' power as both productive and oppressive (Fook, 2012). This interpretation of power is situated in the idea that it is exercised rather than possessed, leading to the understanding that while workers may be constrained, they also have some level of autonomy to resist institutional policies, whether or not these choose to exercise resistance.

In line with this notion of autonomy, the literature suggests that a lack of clear institutional policies and guidelines can lead to workers making their own decisions, which can cause some confusion for their clients who may deal with varying attitudes and practices across different workers (Christian et al., 2001; Löfgren-Mårtenson, 2004, Ward et al., 2001). However, these workers also spoke about feeling disempowered and constrained within their own power relations with organization administrators as well as family members and guardians of their clients. It may have also been the case that some workers chose to respond in such a manner to avoid talking about institutional policies, practices, and getting in trouble with their organizations, even though their research participation was completely anonymous. Future studies could perhaps continue to interrogate whether and how the actual practices of DCWs might actually be tied to organizational texts, including policies and guidelines concerning the sexual expression and practices of the people they serve.

According to the literature, another way to equip workers to deal with the sexuality of people with ID is to provide adequate organizational based training in order to generate discussions about sexuality, and improve workers' practices (Christian et al., 2001; Evans et al., 2009; McConkey & Ryan, 2001). It did seem that, amongst the workers interviewed, education and training about sexual expression and practices were lacking. Of the six workers interviewed, four participants reported that dealing with clients' sexual expression and practices had not been formally addressed in the training programs at their current organizations. Only two participants had received some formal, and yet quite limited, training related to sexuality. Marina's training had been limited to watching videos about sexual abuse and "inappropriate behavior" prevention every second year throughout her 27 years working at the organization.

Paola reported that she had received a lecture from her organization about its policies and guidelines regarding the sexual expression and practices of its clients or, to be more precise, information about abuse prevention and procedures to address inappropriate sexual behaviors. Paola was hesitant to discuss the details about institutional training and policies at her agency. Nonetheless, she noted that, during that lecture on policies and practices in regard to the sexuality of their clients, there was no opportunity for actual open discussion on the topic. It was evident that such training, so focused on abuse prevention and inappropriateness, neglected to address the more positive aspects of sexuality including relationships, intimacy and pleasure. As Marina herself briefly acknowledged:

We participate in watching a video which is- needs to be changed- about abuse and prevention of sexual abuse. But in terms of their rights to be sexually active, we really don't have a lot of about that, they [the agency] kind of stay away from that subject.

Previous studies have suggested that workers tend to be particularly concerned about potential cases of sexual abuse and behaviors that are deemed inappropriate (Ballan, 2001; Löfgren-Mårtenson, 2004). That being the case, this focus can construct sexual expression and practices as being "dangerous" or "wrong," and lead to a lot of restrictions in the lives of people with ID. It is then understandable that some individuals with intellectual disabilities develop conservative or negative beliefs and attitudes towards sexuality themselves (Cuskelly & Bryde, 2004), as they are constantly presented with negative and limited discourses of disability and sexuality.

Conversely, three participants, who had not received training, talked about how they would feel if training related to sexuality was available at their organizations. They did not seem particularly enthusiastic about or receptive to the idea. Rose said that having some training would help her be "a little bit more informed," although she also mentioned that "not necessarily training, but just a conversation" among workers would be enough. As she further explained, it would be more relevant to have "just a conversation, just 'let's talk about this, let's understand it,' at least a conversation." When Rose was asked about what should be addressed in these conversations, she limited herself to saying: "I've never really thought about it."

Michael also seemed hesitant, as he mentioned: "I don't know. I don't- I don't know how that would look so until some- an outline is created with what would fall underneath that topic, it's hard to determine that." This hesitation was, in part, due to his personal discomfort with talking about sexuality, which was particularly evident when, before asking to stop the recorder, Michael disclosed:

That whole topic [sexuality]- it scares me, not that- not with the clients, but in today's society, the whole like- I don't know- it's like a taboo topic and- the topic kind of makes me uncomfortable…

At least in part, Michael's comment points to the pervasiveness of beliefs and attitudes in shaping DCWs' responses to conversations about sex and sexuality with people with ID. Research suggests training and organizational policies would support workers in developing sense of comfort with this topic (Lafferty et al., 2012). However, this study demonstrates how hesitation or deeply held concerns about sexuality and sexual expression may not be alleviated by policies or protocols. As explained by Lafferty and colleagues (2012), in spite of the availability of educational material, training information, and resources, reservations towards engaging in these materials points to more deeply held beliefs that policies alone cannot resolve.

To summarize, this study found that participants were often hesitant to discuss the institutional policies at their organizations and sometimes implied that their actual practices were not really tied to such organizational texts. The implications of which are that DCWs, who had sexual expression and practices addressed in their training programs, received some very limited information. Their training focused on questions of sexual abuse and appropriate behavior but completely disregarded other aspects of sexuality including dating, intimacy, pleasure, and reproduction. The accounts of workers who had not been trained seem to resonate with previous studies suggesting that sexual expression and practices have historically been avoided or considered unnecessary in training programs for workers (Evans et al., 2009; McConkey & Ryan, 2001). Altogether, their accounts seem to indicate that these DCWs may not have the skills to support their clients to actually have a desirable sexual and romantic life. Even for those who had received some training about sexuality, the instructions that they received regarding how to handle situations related to the sexual expression and practices of their clients seemed, at times, confusing, conflicting, and highly problematic, which we discuss in the following section.

"I don't know if I wanna spare more time with this company"

Some participants viewed their jobs as temporary, either out of personal motivation to move to another profession, or because the intensity of the work made a long-term career untenable. Agencies delivering services to people with disabilities commonly struggle with the retention of DCWs (Devereux et al., 2009; Ford & Honnor, 2000). Nevertheless, the position has been well-known for being deskilled and low-paying, as well as for requiring minimum educational credentials and training (Li, 2004). Caring and service sectors have also undergone financial cuts brought on by austerity measures in the 1990s (Martins-Matthew, Sims-Gould & Tong, 2012/2013; Campbell, 2008). This retrenchment in service has resulted in temporary, precarious, insecure work wherein workers are asked to do more with less under increasing time constraints and heightened regulations (Baines, 2018). This context of work leads to physical and emotional worker burnout which has been connected to high turnover rates (Li, 2004). This context of work may be connected to some participants' lack of interest in receiving more training. For instance, Michael perceives his current role as a temporary, a job until he finds another one that is more aligned to his long-term career plans. As he explained:

Since I started working for the government I don't need to work so intense at this occasion but when I am done with my government job, I'll probably hit that job [as an overnight staff] hard-, I'll probably get back to it hardcore and start working a variety of shifts until I find another job that is more impor- some more, more of my alley in regards to a future career.

Speaking to the transitory nature of this role, some of these agencies recruit their DCWs by holding booths at university campuses aiming for students who need a temporary and flexible job that will pay for a part of their education. Susan, for example, first learned about the position of DCW through a job fair at her university. She explained: "I wasn't particularly looking for a particular job with supporting people with disability, I wanted it to be more rehabilitation, but the opportunity came and I just took it." Among the workers interviewed, Susan was the least enthusiastic about potential training as she similarly mentioned that it would "depend on what aspects [related to sexuality] we are approaching." Additionally, Susan mentioned that, "For me, personally, I don't know if I wanna spare more time with this company. That's just me, I mean, it could be different if I am more involved in a certain way, like, if I am full time with this individual, absolutely." One may argue that time is an issue for her because, as a relief DCW who spends a very sparse and limited amount of time with her clients, she feels less attached to those she serves. It may also be the case that she is not interested in spending more time at her agency and receiving additional training because she also does not perceive this job as being in her long-term career plan.

Another worker spoke about how feeling disempowered made her see the job as a temporary one. As Celine articulated:

I guess for me I've never considered it career-wise because of the politics and because of the powerlessness, yeah, it was always […] out of your control and your values- like my values did not mash well with those coming from above so for me it's just- I like the job and I like doing the job but […] it's frustrating in the long run and tiring, yeah, to constantly deal with things that you disagree with [laughs] and then have to enforce things you disagree with.

The sense of disempowerment articulated by Celine is, in part, reflected in other studies showing a connection between an external locus of control, work overload, stress, and burnout (Gray & Muramatsu, 2013; Gray-Stanley & Muramatsu, 2011). In Celine's experience, it was not the job itself that was overwhelming, but rather the constant pressure and lack of control over her work that contributed to her perceiving her position as temporary in spite of enjoying the work. It is unfortunate that the precarious nature of direct care work leads some workers to find alternative employment.

According to the literature, one of the problems with staff recruitment is that, as workers come and go, the relationships between people with ID and their DCWs get easily discontinued, which can at times have negative effects on people with ID (Ford & Honnor, 2000; Li, 2004). For instance, in discussing the personal impact of care worker turnover, clients' with disabilities explain: "When staff whom we really like are hired and then leave, it makes us feel lost and angry" (Li, 2004, p. 2). The motivations for workers to join the field of disability service could certainly be further explored in future studies in order to provide insights into their motivation, commitment, and practices when it comes to facilitating the sexual expression and practices of those they serve.

Additionally, external pressures such as public funding cuts for social services has reshaped the role of DCWs. Baines (2017) highlights the challenges facing front-line staff in care provision, articulating the ways management has cut full-time, permanent positions to the detriment to the workers and clients. The precarious nature of direct care work is reflected in the comments made by participations who actively seek alternative employment. It would be worthwhile to consider whether these responses would be the same if the disability support sector was better funded. The current literature on precarious labour suggests that living wages, stronger job security, sick and vacation day entitlements, as well as benefits, result in higher retention and job satisfaction amongst workers (Ton, 2014). These changes, however, would require stronger funding of public and private social services and a cessation of cuts to the sector (Campbell, 2008) and, perhaps, worker mobilization against austerity.

"Oh, have you seen the sun today?"

To illustrate how workers had sometimes received some problematic instructions on how to support or "deal with" the sexual expression and practices of their clients, we would like to refer to the experiences of Marina and Paola, who had both received some training related to sexuality. Both reported that they had been instructed to avoid the question if possible. In other words, they were supposed to change the subject of the conversation, if a client ever brought up questions or made comments related to sexual expression and practices. Through this organizational messaging, it becomes clear to DCWs that behaviours related to sexuality and sexual expression are made un/acceptable through the communication of workplace policies. Considering the role of DCWs in these interactions, Drinkwater (2015) highlights the ways positive or negative responses reinforce normative values and behaviours, shaping the experiences of people with ID. Specifically, encouraging clients to regulate their comments or behaviours in response to the resistance expressed by the DWC is enacted by redirecting the conversation. Drinkwater (2015) explains "[t]he consequence (reward) [to the client] is to enter the virtuous circle of valued behaviors leading to valued responses, which results in enhanced self-esteem, which in turn encourages more valued behaviors" (p. 233). DCWs' actions are further disciplined through organizational surveillance, which includes the monitoring of log books and client notes (Drinkwater, 2015), leaving little room for resistance to such policies.

Even though Marina did not agree with her organization's approach, she stated: "the message is that we [as an organization] prefer that individuals are asexual," and consequently should "try to redirect as much as possible." She noted that while she would feel somewhat comfortable engaging in discussions about sexuality with her clients, she had been instructed to redirect such discussions to the parents and guardians of her clients, a practice which she did not contest and that ultimately foreclosed any possibilities for dialogues. Marina said:

I'd simply say, "You're gonna have to talk to your guardian," that would be my answer. "If you want to meet that person and have a relationship, if you want a boyfriend or a girlfriend, then you need to talk to your guardian about that"…

Marina's comments highlight the complex ways in which power is exercised through an institutional context which materializes in a silencing of expression by workers. Situated at the intersection between ensuring personal autonomy while acting as agents of social order/control (Lorenz, 2016), workers find themselves navigating the terrain of productive and reproductive power. One could argue that silence can actually serve as a mechanism for the regulation of sexualities, especially in terms of negating the very sexual subjectivity or, in other words, de-sexualizing people with ID. As Shildrick (2007) articulates, "[a]ny notable silence, then, must surely convey a negative meaning, in this case implying that any reference to a specific sexuality is missing because people with disabilities are being actively constructed as nonsexual" and, in such manner, silence can be understood as a form of "management by nonrecognition" (p.55).

Paola, who had been working in the field for only two months, received similar instructions "to redirect" when dealing with instances of inappropriate behavior from her clients towards her or others:

Because the individual knows that you are a worker and he's not supposed to talk with you in certain ways … we can say that it's not appropriate to do that … if it's not directed to you, um… just change the topic, "Oh, have you seen the sun today?"

We would suggest that more than simply changing the subject of the conversation, redirecting is also about making someone else be the decision-maker, which reflects the tensions of who has the proper authority over this kind of issue. Thus, Paola's account illuminates how such practice should be considered a power issue, but also indicates the level of discomfort by workers as multi-factored. For Paola, being able to redirect her clients' attention to other topics has been somewhat of a "relief" as she considers herself to be "too much insecure" to deal with the sexual expression and practices of her clients. She explained her insecurity by saying:

My insecurity of- of saying about that- I will be afraid of um… how can I explain? Um… for example, if an individual has an issue with sexuality I'd be afraid of replying to this, like to keep on this topic, so I'll redirect because I will not know like- because I don't know how to handle, that's why I say the agency is like responsible for the orientation because I think they should address this. [whispers] I am too much insecure.

Evident in her statement is that a lack of helpful information and support from the organization can further discourage some workers from engaging in discussions with their clients and supporting them when it comes to sexuality, because the workers feel unprepared to do so. As for Paola, she seemed particularly apprehensive about where such discussions with her clients would take her, as she noted:

I am afraid of talking about that, like, um… replying or talking about that because I don't know if I will say like appropriately and the person will be like um… be willing to ask more and talk more about that.

It seems that some of her attitude has to do with her own personal discomfort with the topic of sexuality, her hushed voice and the coyness seem to indicate a certain prudishness, which perhaps no institutional policy or training could actually influence or change. Nonetheless, it is reasonable to argue that this "redirect approach" has problematic consequences to the intimate lives of disabled people. Firstly, it infantilizes people with ID, treating them as children and presuming that these individuals cannot speak for themselves or make sense of their own sexuality. Secondly, it shuts down opportunities for individuals with ID to have more open and perhaps informative discussions about sexual expression and practices. Thirdly, it is problematic because it takes away the agency of people with ID at the same time that it places decision-making power into the hands of the worker, parents and family members who get to decide the scope of sexual expression that is permissible for individuals with ID.

As it can be the regulation of sexualities among people with ID can occur through workers' practices that are shaped by institutional language which explicitly regulate what and how much can be said about sexuality. Participants did not contest that regulation, and thus, in their practice they reproduced that regulation around acceptable conversations and discourses. The fear of facing repercussions for violating institutional policies was so significant among the workers that none of them talked about forms of resistance and pushing back against those policies, even when they acknowledged their oppressive nature. For instance, Celine talked about the common overmedication of her clients. She shared: "it's frustrating and tiring to constantly deal with things that you disagree with and then have to enforce things you disagree with […] the overmedication was a big one for me, I disagree with that." Despite her disagreement with this practice, Celine never contested it nor tried to intervene on the behalf of her clients.

This silence around conversations about sexuality with people with ID and organizations are implicated in the regulation of what can be said about sexuality. In other words, silence can serve as a tool for sexual regulation. Some service providers maintain restrictive and/or reactive policies and practices because of concerns around potential disagreements with caregivers' values and attitudes regarding sexuality, safety of clients and the organization's 'duty to care,' and the fear of potential legal consequences to the organization, amongst others (McDaniels and Fleming, 2018; Santinele Martino, 2014). It is also worth noting how this "official" silence around sexuality does not mean that conversations about sexuality are not happening among DCWs and mid-management, or even among DCWs and people they serve. Rather, DCWs shared that they often talked among themselves about instances related to the sexual expression of their clients, showing how power can be contested and sexuality finds a way into discourse despite being discouraged by organizations.

In the next section, we offer another example to show how some workers have also had to deal with some conflicting and unrealistic organizational expectations and understandings of what are held to be permissible sexual expression and practices for individuals with ID.

"This is not something God would want"

It is reasonable to speculate that organizational values can shape the practices of DCWs regarding the sexual expression and practices of their clients. However, few studies to date have qualitatively examined how religious organizational values can shape the ways in which front-line support workers respond to the sexuality of people with ID (Santinele Martino, 2014). It is important to note that, in Alberta, some of the agencies that serve people with ID, as stated in their organizational texts available to the general public, have a strongly professed basis in Christianity, and it is fair to assume that those values will affect workers' capacity or willingness to support their clients' sexual expression and practices. The role of workers' beliefs and attitudes about sexuality, and their situations within value-based agencies, was a central aspect of the interviews with DCWs.

This was particularly evident in the cases of Marina and Rose, who had both been working at Christian value-based organizations. These two participants discussed the influence of religious organizational values in their actual work practices related to sexuality, even though both self-identified as being agnostic. Marina, who has been working for a Christian organization for over 20 years, stated: "The policy is there. It's not encouraged that individuals have relationships, sexual relationships with others." Marina suggested that this was the case because: "it's a religious association and so I think they simply say, 'this is not something that God would want,' yeah, because they'd need to be married." Though from a different country, in a similar manner, Feely (2016) notes:

Disability service provision in the Republic of Ireland can be baffling to the outsider. The Catholic Church came to dominate service provisions in the late 19th century and today, whilst they receive state funding, many continue to hold an explicitly Catholic ethos […] Catholic teaching on sexuality, of course, forbids premarital sex, homosexuality and contraception, which, in turn, can affect policy and attitudes in services (p.727).

Marina and Rose's experiences speak precisely to the ways in which religion and organizational religious values can serve as the guidance for workers in terms of boundary work regarding acceptable forms of sexual expression and practices among people with ID. Rose also spoke about how, even though her organization allowed their clients to get married, clients were still discouraged or barred from actually dating, having hook-ups, or having pre-marital sex. As Rose noted, clients in her organization are allowed to "express these things, as long as you're like married." To further explain the expectations of her organization, she said it bluntly: "You say your vows. You're celibate, celibate, celibate, married, family, sex." There seems to be a clear disjuncture though between the time individuals with intellectual disabilities are single to the time that they are married. Excluded in these expectations are some common steps in building relationships such as flirtation, courtship and intimacy. As Rose acknowledged, such an approach is simply unrealistic.

Nonetheless, Rose seemed to provide a justification for the practices of her organization, as she also said: "I don't necessarily agree with Christian religions, but I think that's not something hidden from people, it's open, like that understanding of the world." Rose furthered explained that, because the agency was open about its religious values and clients had supposedly chosen deliberately to receive services from that particular organization, there was not much room for critiquing the policies and practices of the agency. Nevertheless, she acknowledged her privileged position as she noted, "I can say that because I can disagree to it, and I have the freedom to walk away from it but if I had a disability and my family liked these rules, I don't have the right to walk away from it so that's where the trouble is." That is to say that, sometimes, people with ID might have little say in terms of selecting their service providers while others around them, including their family members and guardians, might make such decisions for them. While we acknowledge that for some people with ID receiving services from religious-based organizations is desirable and/or preferred, this is not the case for everyone. It was evident in participants' accounts that, for many of the people they served, preference over service provision had been devoid of any negotiations. In addition, DCWs often restricted themselves to merely following organizational values without contestation and without considering clients' agency, choices, and desires of their own sexual lives. More work is also needed to better understand the implications of religious-led organizations in terms of drawing those boundaries and managing the sexualities of people with ID.

These two narratives illuminate some clear inconsistencies in terms of what these workers have been told about allowing or discouraging sexual expression and practices in their clients. Marina and Rose both recognized that the directions they had received from their organizations were both disjunctured and unrealistic. However, Marina chose to follow the procedures in place, while Rose, in addition to following procedures, even seemed to provide a justification for her agency's practices. Notably, even though power involves contestation and resistance, this was not evident in the interviews with DCWs. Workers commonly followed organizational policies and expected practices, even when they did not agree with those values and practices. Nevertheless, it was evident in the accounts of DCWs that they had faced difficulties when dealing with the sexual expression and practices of their clients, due to a lack of helpful information and support, as well as due to problematic directions that they had received from their organizations. Moreover, these workers' narratives expose how they see themselves within their own power struggles with family members, guardians, and employers.

"The topic kind of makes me uncomfortable"

In addition to some of those constraints identified by the workers, it was evident that, when talking about their attitudes and practices, workers' own positions as sexual beings could influence their work. For instance, as the literature has suggested, workers' age and religious background can be influencing factors in their beliefs and attitudes when it comes to dealing with the sexuality of their clients. Marina's quote below shows how our sexual identities and how we make sense of them are not fixed, and that indeed these are constantly shaped by our various experiences. This should be noted as we talk about the experiences and practices of DCWs because these social actors are also engaged in an ongoing negotiation of their sexual identities and understandings of sexuality. Marina, for example, talked about how getting older and more comfortable with her own sexuality had influenced her understanding about the sexual rights of her clients:

You know, as you get older, your own sexuality changes, right? You start to realize "oh ok, I was raised in a religious home but I don't need to be ashamed of this, this is actually me and I have the right to this and nobody else has the right to take that away and it's ok" … so now I would advocate for the rights of others far more strongly than when I was 20, you know, I was kind of shy about the whole sexuality myself, right?

Paola, who was in her mid-20s, also made a clear reference to that ongoing personal negotiation, as she noted:

People put too much proscription against it and put fear in everybody, if it was me like a few years before [nervous laughter] I would not be doing this interview with you [nervous laughter] but I am kind of like more open minded now.

Paola is telling us here that her particular social, cultural and historical context, in which sexuality has been understood both in terms of 'proscription' and 'fear,' has shaped her own position as a sexual being and made her hesitant to even openly talking about sexuality. Even though she said that she was 'kind of like more open minded now,' Paola's statement and nervous laughter here indeed seem to further illuminate her historical personal discomfort with the topic of sexuality, as well as her willingness to follow the agency's guidelines and avoid discussions about sexual expression and practices with her clients.

As a final example, Michael, who showed the most discomfort when talking about sexuality, disclosed towards the end of his interview that he had been sexually abused as a child. The following excerpt demonstrates how his historical personal narratives can intersect with his current attitudes and practices towards sexuality:

Michael: … just like that whole topic [sexuality] - it scares me, not that- not with the clients, but in today's society, the whole like- I don't know- it's like a taboo topic and- the topic kind of makes me uncomfortable, yeah.

Interviewer: Can you tell me more about it?

Michael: like why it makes me uncomfortable?

Interviewer: Yeah.

Michael: I don't know if it's because of my past or- childhood- but- no- it makes me wanna cry, I don't know, I don't know, it makes me wanna cry, not that topic, I don't know, it's just the- like right now, I have a hard time thinking, I have a hard time breathing, it's- yeah- I don't know why I am uncomfortable.

During deliberations regarding the ethics protocol for this study, it was assumed that people with ID could potentially get upset when sharing their experiences around sexuality and sexual expression and practices, as some of those experiences could indeed be painful to talk about. However, less attention was paid to how workers could also get upset during the interview. This is partly due to the understanding that people with ID are vulnerable, requiring extra protection and supports, which at times leads to an (over)protection that is not equally expected for other social groups (Santinele Martino and Fudge Schormans, 2018). In a way, this position reflects the literature that tends to quantitatively focus on the broader social identities of workers and their influence on their attitudes and experiences rather than delving into the complexities of workers' own sexual identities. As this paper articulates, these complexities might involve pleasurable, hurtful, or challenging experiences with regards to sexuality. Banks (2016) describes the negotiation of the worker as a person in the context of a supportive role, highlighting the ongoing tension imbued in this position. Organizational contexts are also an influential factor that can either facilitate or hinder the workers' decision-making process through access guidelines or policies when faced with a topic that causes them personal discomfort. At times, however, due to workers' own sexual subjectivities, no matter how much training is provided, their attitudes towards sexuality will always be colored by their past experiences.

The accounts of these DCWs indicate that there could be other factors and narratives that are embedded in their practices, even those seemly oppressive ones. Also, they seem to suggest that, in addition to examining the sexual expression and practices of people with ID, it is important to look at the romantic and sexual narratives of workers through qualitative research to better understand how these might influence their approach to disability and sexuality. Additionally, it would be relevant to contextualize their experiences within a culture that commonly engenders fear and silence all around when it comes to sexuality, especially when it is about the sexual expression and practices of people with intellectual disabilities. Altogether, the accounts of DCWs seem to illuminate a culture that commonly sees disability and sexuality as something that will land people in trouble.

Discussion and Conclusions

The aim of this paper was to articulate the role of organizational policies and practices, as well as support workers' sexual subjectivities and values, in foreclosing possibilities for sexual expression and practices among people with ID. While this paper draws on a small sample of DCWs, this exploratory study shines light on some of the complexities in the power relations and practices of front-line care workers regarding issues related to the sexuality of people with ID. This study raises a series of important questions for future inquiry. Altogether, participants' narratives point to operations of power as much more complex than binaries of 'oppressor' and 'oppressed' as they spoke about being embedded in various power struggles of their own and feeling as though they had little power. This sense of disempowerment tends to push decision making to other social actors (e.g., parents, agency administrators). Yet, workers still tend to have greater legitimacy and power, especially in relation to the people they serve, and it was also evident that sometimes DCWs chose not to use their power in ways that could advocate for the sexual rights of people with ID. Future research should continue to explore how power operations shape the interactions between people with ID and DCWs. It also important to have a better qualitative understanding of how workers, as sexual subjects themselves, bring with them different sexual/romantic experiences, dis/comfort, and trauma that can shape their practices, no matter the institutional policies and training in place. Our paper also speaks to precarious labor that can prevent greater commitment on the part of DCWs to advocating for the people with ID that they supported. That is to say, it is essential to continue to explore how austerity and precarious labor can have an impact on the practices of DCWs, including their practices that may affect the romantic and sexual lives of people with ID. More work could also focus on the varying roles of religion on policies, values, and practices of service providers and, consequently, how they shape the experiences and practices of DCWs. Above all, the accounts of DCWs speak to a broader culture that silences people, and a fear of 'getting in trouble,' both from people with ID and workers.

Acknowledgements

We would like to thank the research participants for their time and for generously sharing their experiences. We also wish to thank the anonymous reviewers for their insightful comments, which helped us improve this article. The first author would like to thank the Parkland Institute (Alberta, Canada) for helping fund the early stages of this project.

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Endnotes

  1. The direct care workers interviewed often used the term "client" to refer to people with ID who they worked with.
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  2. All names and identifiers have been changed.
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  3. This study was reviewed by, and received ethics approval from, the University of Lethbridge Human Subject Research Committee. All participants provided appropriate informed consent.
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  4. Previous studies have examined direct care work as a gendered form of labor and have inquired how gender shapes the interactions between direct care workers and people with ID (see, for example, Santinele Martino, 2019; Wilson et al. 2011).
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