Abstract
Occupational therapy practitioners generally agree that sex is a meaningful occupation and should be part of the rehabilitation process; however, there has been reluctance to include clients’ sexual concerns in practice. To explore how occupational therapy is addressing clients’ sexual concerns, we (one author with a professional background in occupational therapy and the other who is a consumer of occupational therapy services) used a coconstructed autoethnographic approach that involved shared reflection between us. We discuss insights discovered through the coconstructed process, including the potential health risks involved in sexual activity, the importance of sexuality as a core aspect of identity, the ways that rehabilitation currently excludes sexuality, and the potential role of occupational therapy in addressing sexuality.
Sex is an important part of many people’s lives; however, occupational therapy practitioners rarely address clients’ sexual concerns or meaningful sex occupations in practice (Hyland & McGrath, 2013; McGrath & Lynch, 2014; McGrath & Sakellariou, 2016). Exclusion of sex and sexuality within the rehabilitative process has serious consequences for clients and occupational therapy practice as a whole. In this article, we explore how occupational therapy does or could address sex and sexuality through the use of a coconstructed autoethnography. This coconstruction took place over several months between us as we developed a deeper understanding of the state of occupational therapy regarding sex and some of the consequences that can occur when client sexuality is ignored.
Here, we describe our backgrounds:
Natalie Rose: I am a 34-yr-old PhD candidate in rehabilitation science. I hold a master’s degree in occupational therapy, though I am not currently practicing. Throughout my occupational therapy education, I was interested in the topic of sex and sexuality, which led me to pursue my PhD studies, using principles of both rehabilitation and disability studies to explore the role of disability in sex and relationships. This interest was further extended when I married a man with a disability and began participating in the sex-positive community, which values and celebrates all forms of safe and consensual sex.
Claire Hughes: I am a 30-yr-old matchmaker, sex educator, and student who used to be vice president of an artistic, feminist pornography company. I came to terms with my body and loved it pretty thoroughly. I had finally found my dream partner, when out of the blue, in 2015, I experienced a vertebral artery dissection that caused three strokes in my cerebellum and medulla oblongata. I spent 1.5 mo in the hospital and inpatient rehabilitation, and I engaged in outpatient rehabilitation for 3 yr poststroke.
We met each other through the sex-positive community in our city and were part of the same social circles before Claire’s stroke. After the stroke, our shared interests in sex and disability resulted in multiple casual discussions, which were the catalyst for engaging in this research process together. Although we come to this process with different perspectives on rehabilitation, our relationship has never been of a clinical nature. Our goal is to engage occupational therapy practitioners to consider the ways in which they exclude or include sex (i.e., various forms of physical sexual activity) and sexuality (the ways people relate to and think about themselves as sexual beings) in practice. Throughout this article, the use of we indicates both authors’ shared thoughts, whereas individual thoughts are prefaced by each author’s name. Block quotes indicate transcribed sections from taped discussions between us. Please note that this article contains frank and descriptive discussions of sex and sexual activity.
Background
The practice of including sexuality in occupational therapy has historically had a level of contention within the field (Couldrick, 1998, 2005). Couldrick (2005) argued that occupational therapy should be concerned with valuing people’s humanity and that therapists should be focused on a holistic view of individuals, which includes their sexuality and valued sexual occupations. Multiple authors (McAlonan, 1996; Northcott & Chard, 2000; Sakellariou & Algado, 2006) proposed that sexual concerns are often a top priority for people with disabilities; therefore, therapists have a responsibility to understand these concerns and address them in practice. It has also been proposed that reluctance to discuss sexual issues is tied to historical and political views of sexuality and perceptions that people with disabilities are asexual, passive recipients of service (McGrath & Sakellariou, 2016; Pollard & Sakellariou, 2007). Although individual practitioners may not hold these values, society’s general discomfort with disability and sexuality has led to a relative silencing of sexual issues within rehabilitation as a whole and occupational therapy specifically.
Although the literature indicates that sex is a concern for clients involved in rehabilitation, and that occupational therapy has a role to play in this area, occupational therapy practitioners rarely address issues of sex and sexuality within their practice (Hyland & McGrath, 2013; Jones, Weerakoon, & Pynor, 2005; McGrath & Lynch, 2014). A variety of reasons have been proposed for why sexuality has been excluded from occupational therapy practice, including lack of skills (Hyland & McGrath, 2013; Jones et al., 2005; McGrath & Lynch, 2014), concerns that clients may be embarrassed if the topic is raised (Hyland & McGrath, 2013; McGrath & Lynch, 2014), lack of support from practice settings (Hyland & McGrath, 2013), and fears of being professionally discredited (McGrath & Lynch, 2014). Research has highlighted that personal discomfort with the topic of sexuality may lead practitioners to ignore or leave out discussions of sexuality within practice to avoid personal embarrassment or a perceived lack of professionalism (Jones et al., 2005).
Although personal comfort of clinicians in conducting their professional work must be respected, it is also important for them to tune into clients’ voices and the consequences that they may experience when their sexual concerns are ignored during the rehabilitation process. Clients generally seek basic information and discussion about sex (Annon, 1976; Taylor & Davis, 2007). In addition, they agree that multiple professions may contribute to sexual rehabilitation services but that occupational therapy is uniquely positioned to provide guidance regarding certain elements of sex and sexuality (McAlonan, 1996; Northcott & Chard, 2000). Given the previous literature about the importance of sexuality for clients, and the reluctance of practitioners to address these issues, further work is needed to understand the nature of sexual concerns for clients and how to incorporate them into occupational therapy practice.
Method
In this article, we used coconstructed autoethnography (Cann & DeMeulenaere, 2012). Coconstructed research emphasizes collaboration, whereas autoethnography places the researchers as central to the research process and involves engaging in self-reflection around a particular phenomenon (Gannon, 2006). The approach focuses on the narrative power of telling stories and engaging personal experience (Ellis, Adams, & Bochner, 2011). Although traditional research is often driven by professional knowledge and top-down approaches of “studying people,” a coconstructed autoethnography places the “expert” and the “subject” in an equal investigator role. Questions, topics of interest, and methods of investigation are developed in tandem. Knowledge is created through discussion and interaction, and each investigator’s point of view is considered, acknowledged, and used as a place for further investigation.
The use of coconstructed autoethnography allowed us to generate our narrative as an iterative process from start to finish. This process permitted us to transcend traditional boundaries of researcher and subject (or clinician and client). Together, we initiated our learning and developed a shared understanding of the possibilities of occupational therapy practice regarding sexuality (Cann & DeMeulenaere, 2012; F. Shanouda, personal communication, August 20, 2015).
Our coconstructed autoethnography began at Claire’s rehabilitation hospital bedside during a visit. After discovering that there was a lot to explore regarding sex and occupational therapy, we continued our discussions over the next several days using social media. Two months after Claire’s discharge, we got together and engaged in a 2-hr taped discussion, using some questions we each had planned as well as free-flowing discussion; our conversation was later transcribed by Natalie. To complete our analysis, we individually reviewed the transcribed interview and extracted themes that we believed were important to our overall goal. We then met in person again to build our narrative through additional discussion, resulting in a coconstructed outline that included key themes and messages. Natalie completed a first draft of the article, at which time we met to discuss its content and edit the work together. Because this research involves only our reflections and self-work, no research ethics board approval was required (Canadian Interagency Advisory Panel on Research Ethics, Subgroup on Procedural Issues for the TCPS, 2008).
Analysis and Discussion
Sexual Consequences of Stroke
Claire: Before my stroke, a big percentage of what I did was talk about sex very openly. I knew exactly what my body liked, I was not afraid to talk about it, I was not afraid to be open with partners and with the greater public about every part of my sexuality, and I was very sexually active. The experience of my stroke changed a lot of that. In terms of my lasting symptoms, I lost sensation on the left side of my body, and I experience minor residual right-side weakness, substantial balance and dizziness issues, problems with my eyesight, vocal cord paralysis, and residual poststroke fatigue, which makes everything so much harder to do.
Natalie: It strikes me that this is a list of symptoms that most occupational therapy practitioners would have some familiarity with, but in my own occupational therapy education, the effects of these symptoms on various sexual activities, functions, and sensations were never discussed. I asked Claire to describe how her stroke has changed her body and her experience of sex. The following is our discussion:
Claire: Because I have reduced sensation on the left side of my body, I also have reduced sensation in my genitals, which means I can still feel something on the affected side, but it does not feel good. When someone else touches me unexpectedly on my left side, it’s an unpleasant sensation. Genital stimulation from somebody else needs to be on the right side. So my clitoris can still feel things. I mean, it’s roughly 8,000 nerves, so even if I’m down to 4,000, that’s still pretty good. I can still have a clitoral orgasm, but I can’t have a vaginal (g-spot) orgasm anymore because when I say I can’t feel half my body, I literally mean split down the middle.
Natalie: So you feel half the object during penetration?
Claire: Yes. Penetration is very different. It still feels good on one side, and it doesn’t necessarily feel bad on the inside, it just feels like more or less nothing, but I can’t have a vaginal orgasm, but I could before, so that’s a real bummer. Any kind of anal play is more or less off the table, especially anything pertaining to penetrative anal sex. I don’t feel safe or comfortable at the moment with any kind of anal insertion because my body doesn’t react the same way. A vagina is already open and self-lubricating even if you don’t have sensation, so I feel relatively safe about that, but anal sex is a completely different thing and if you can’t feel half of the experience of anal sex, you don't know if something is going wrong. In terms of my body, I don’t feel my left nipple and I used to be someone who derived a certain amount of pleasure from my nipples, as in I could actually feel intense sensation from my breasts and that was awesome. Now I feel like one of my breasts is just for decoration. It's a strange feeling.
If occupational therapy practitioners are going to incorporate sexual occupations within their practice, they need to understand how various symptoms might affect sexual activity. Practitioners could advance this knowledge by reading literature that details the sexual consequences of various common symptomologies and by simply asking their clients if they have any concerns regarding their symptoms and their impact on valued sexual activities.
Promoting Health and Reducing Risk
Claire: It really would have been helpful to talk about what positions are safer or safest for me, as someone who is always dizzy, often quite substantially so. I had a vertebral artery dissection, so feel very aware of my neck. Even with sex in the missionary position, though it is probably technically the safest for someone who is dizzy, there is some inadvertent pressure on the neck that caused me concern. It would have been great to have somebody talk me through some of my anxieties about it.
Natalie: People engage in a wide variety of sexual activities that could be dangerous depending on their current health status, symptoms, or disability. A prominent goal of occupational therapy is to promote health and well-being. If sexual activity might pose a risk to the client, this risk should be discussed with clients to promote health and well-being and to prevent further injury or illness.
Claire: I was given precautions in many other areas, such as healthy eating and the risks of smoking, alcohol, and drugs, and I was told to be careful when doing yoga or dance because of the risk of a second dissection. From these precautions, I could assume that various sexual activities, including consensually rough or highly active sexual activity, could pose the risk of further injury, but I had to make that assumption myself. I’ve also been concerned about different sexual positions affecting my dizziness and the potential to fall or hurt myself while engaged in sex. Even though I think these types of activities could be dangerous to me, no one ever brought them up in terms of staying safe after my discharge from the rehab hospital.
Sexual Identity and Social Roles
Claire: I want to feel hot, desired, and sexy. I have a tremendous amount of difficulty feeling sexy now, and it’s not so much because of my cane, but its more about the times where I’m in bed or I’m on a date and I suddenly get very dizzy. My body feels very different, and I feel less stability. I was an awkward person at times before, but I always had this sort of sensuality and fluidity, and I don’t have that as much anymore. Before, I was able to move my body in a way that I found seductive. All of a sudden, I was so unsure and shaky and just generally weak, which was so unlike the presence I had cultivated to feel sexy and powerful.
Natalie: In addition to a loss of valued sexual occupations, Claire’s social roles and identity related to her sexuality were affected. Because these issues were never addressed with her, I wondered what had been addressed with the occupational therapists that she worked with. She described frustrating encounters where she worked mostly on her fine motor skills through simple activities such as manipulating balls and digging objects out of sand. My values regarding occupational therapy include a keen interest in how people interact with their world and how they derive meaning from occupations. In reflecting on Claire’s experiences, I have learned that her identity is inherently wrapped up in her sexuality and that meaning in her life is derived, in part, through engaging in valued sexual occupations.
Ways in Which Rehabilitation Excludes Sex
Natalie: One of the personal anecdotes that I have heard from occupational therapists is that they would be willing to talk about sexual concerns, but their clients never bring it up; therefore, they assume it is not a concern. Given the centrality of sex and sexuality in Claire’s life and her openness to discussing sex in many public venues, we had questions about why Claire never brought up the topic herself during rehabilitation. The following is our discussion:
Claire: Well I mean, they didn’t say anything, so that is a sign. It’s the universal sign that we’re not going to talk about this.
Natalie: Right, because you had no indication as to whether you could bring up sexual concerns.
Claire: Right, there were no pride stickers anywhere. Even little things like that, not that sex and sexual orientation should necessarily be linked, but they can indicate that this is an open place where sex could be discussed.
Claire never felt comfortable enough to initiate discussion about sex; thus, her concerns were never addressed. Although it is possible that her therapists would have happily engaged her in this topic had it been brought up to them, it is also possible that they would have acted awkward, offended, or dismissive. Without any indication from them, Claire was never willing to take the risk. It is important to remember that sex is a highly sensitive and sometimes difficult topic for clients, and occupational therapy practitioners cannot put the onus on clients to be the initiators of sexual discussions. Instead, practitioners should initiate discussion by creating a sexually inclusive environment and asking clients’ permission to discuss sex and sexuality.
Claire: What would be helpful is language used by practitioners that indicates that you can tell them what you are feeling and what you want to know and that it’s an open nonjudgmental environment. I don’t think I was ever told that, and I think it would have made all the difference. I really do. My therapists knew that I was highly involved in sexuality-based activities. They also knew that I was 28 yr old and lived with a romantic partner. Yet, even with all these markers that I was very likely sexually active, the therapists never once brought it up with me or considered that it might be a concern. It is my belief that if sex was not brought up with me, then I highly doubt it is being discussed with other clients. I really strongly believe that it should not be left to the client to bring up the topic of sex. The occupational therapy practitioner is paid to help people not only work through what they need to do but also identify what it is they want to work on. If you don’t know that an option exists, you’re not going to know to ask for it. I think hospitals in general need to be more sex-positive and more clearly open spaces for discussion, and I think occupational therapy practitioners could lead that.
Addressing Sexuality in Occupational Therapy Practice
Even though sex and sexuality were tied to some of Claire’s most important occupational issues, they were never addressed, thus threatening the client-centered and holistic nature of her care. Note that we do not mean to single out her particular therapists or rehabilitation setting. Claire’s experiences illustrate the previously reported gap between theory and practice in addressing sex in occupational therapy (Hyland & McGrath, 2013; McGrath & Lynch, 2014). Occupational therapists have expressed that they lack the skills or training needed to address sex and sexuality with clients, but many of the needed skills are already within the domain of traditional occupational therapy practice (Evans, 1987). Sexual concerns often can be addressed through positioning, tool adaptation, energy conservation principles, and other forms of intervention already familiar to most practitioners.
Throughout our discussions, Natalie was able to use knowledge gained through occupational therapy education when discussing some of Claire’s concerns. Claire was experiencing fatigue, so we discussed engaging in sexual activity earlier in the day. In addressing concerns of dizziness and pressure on her neck, we talked about a side-lying position with the use of pillows for added support. Regarding changes in sexual identity, we talked about taking the time to grieve over certain losses but also that over time she will discover and develop a new sexual identity. We pointed out all the supports that she has, including a supportive partner, and the fact that her newfound disabilities have brought her closer to the disability and sexuality community in our city. Claire’s sexual rehabilitation did not require significant therapeutic intervention but benefited simply from discussing her concerns with someone who was already familiar with adapting environments and activities.
Implications for Occupational Therapy Practice
To practice in a holistic and client-centered manner, occupational therapy practitioners must consider the importance of sex as a group of meaningful occupations and a key component to identity. Claire’s story points to some of the concerns that clients may have regarding their sexuality and the potential consequences of ignoring or invalidating these meaningful occupations. In the future, practitioners should
Consider clients’ sexual concerns.
Ask their clients whether they have concerns regarding symptoms and their impact on valued sexual activities.
Create environments that indicate to clients that their sexual concerns are valid and important.
Take steps to increase their own comfort level with discussing sex and sexuality in their practice.
Conclusion
In this article, we have explored how occupational therapy addresses sex and sexuality with clients and the consequences of failing to do so. Using a coconstructed autoethnographic methodology, we have developed a clearer understanding of Claire’s sexual rehabilitation and the potential occupational therapy role within it. Sexuality affects many areas of people’s lives, including their safety, valued occupations, social roles, and identity. These concerns are often significant for people with disability or illness; therefore, they should not be ignored simply out of professional discomfort. Occupational therapy has the power to play a meaningful and significant role in people’s lives, and through this power, it also has an obligation to view clients as whole people, which includes sex and sexuality.
Footnotes
Acknowledgments
The authors thank Karen Yoshida and Fady Shanouda for their ongoing discussion and support in the creation of this article.