Ethically important moments: Researching the intimate lives of adults labeled/with intellectual disabilities

Abstract

People labeled/with intellectual disabilities are rarely given the opportunity to “speak” about their sexual and romantic experiences on their own behalf. Persisting stereotypes and (over)protectionism sometimes serve as social mechanisms that silence disabled people in knowledge creation. Although further protections need to be implemented, people labeled/with intellectual disabilities must have an opportunity to share their perspectives and experiences with love and intimacy. This research note discusses some of the “ethically important moments” I have encountered as a researcher looking at the romantic and sexual lives of adults labeled/with intellectual disabilities, as well as how my embodied experience in the field led me to reflect on my own positionality as a researcher and sexual being.

Introduction

“You’re about to open a can of worms. Are you sure you want to do that?” is what I was told by a leader of a national organization with regards to my research interest in exploring the sexualities of people with disabilities. As I started doing this work as an undergraduate student, interviewing service providers across New York State, I noticed support workers and organization leaders often referring to the intersection of disability and sexuality as “messy,” “risky,” and “tricky.” It was clear to me that this was a taboo topic, one that many organizations commonly chose to avoid. Yet, in my interactions with self-advocates and people labeled/with intellectual disabilities, it was also evident that sexuality was an important aspect of life to many people. For that reason, I decided that it was important to open that supposed “can of worms.” This field note draws on reflections based on my different qualitative studies focused on the romantic and sexual lives of adults labeled/with intellectual disabilities in Canada. When it comes to sexuality and sexual expression, people labeled/with intellectual disabilities commonly confront two “controlling images” (Collins, 1990); on the one hand, they are perceived to have “excessive” sexualities, especially men labeled/with intellectual disabilities. On the other hand, they are sometimes de-sexualized and infantilized (Gill, 2015). In addition, people labeled/with intellectual disabilities have rarely been allowed to speak about their sexual and romantic experiences on their own behalf (Santinele Martino and Fudge Schormans, 2018), nor are they allowed to pursue romantic and sexual relationships (Santinele Martino, 2021).

As a critical disability studies scholar, I center the voices of people labeled/with intellectual disabilities, acknowledging them as agents and meaning makers of their own lives and affording them with the opportunity to participate in knowledge construction (McDonald et al., 2016). Additionally, I am a firm believer in the power of sexual stories (Plummer, 1995) and understand that telling stories is an integral part of creating new and more inclusive and diverse sexual cultures (Santinele Martino and Fudge Schormans, 2021; Siebers, 2008). It is worth noting that disabled people themselves are using a multitude of platforms, such as blogs, podcasts, and YouTube videos, to share their experiences and perspectives, and ensure that sexuality and sexual rights are a part of disability activism (see Santinele Martino and Campbell, 2019) for examples). By sharing participants’ sexual stories, I aim to advance “disabled people’s political struggles” and help “to eradicate disabling barriers in society” (Barnes, 2008: 7). However, due to persisting stereotypes and (over)protectionism people labeled/with intellectual disabilities are often silenced in knowledge creation.

Protection and rights: Not mutually exclusive

The process of receiving ethics approval can be particularly challenging in research involving people with intellectual disabilities, especially for studies related to sexuality and sexual expression (Iacono, 2006). The gatekeeping around people labeled/with intellectual disabilities is so common that they have generally had fewer opportunities to speak about their experiences and perspectives, especially regarding their romantic and sexual lives (Santinele Martino and Fudge Schormans, 2018). The process for receiving ethics approval in my research projects has been lengthy, requiring telephone calls, extensive written responses to the ethics board, one-on-one meetings with ethics officers, and a meeting with the full ethics board. Yet, disability scholars and activists have long advocated for “nothing about us without us” (Charlton, 1998), emphasizing the importance of including disabled people in research. Furthermore, as articulated by Santinele Martino and Fudge Schormans (2018: para. 1):

It is [also] unethical to assume that people labelled with intellectual disabilities cannot make their own decisions and, though greater care may be needed, people with intellectual disabilities have the right to share their perspectives and “speak” on their own behalf – in their daily lives as well as through their active inclusion in research.

Studies suggest that people with intellectual disabilities are at a higher risk of experiencing different forms of abuse than non-disabled people (Byrne, 2018; Shapiro, 2018). In addition, we know that sexual violence among the general population tends to be underreported and underprosecuted (Myhill and Allen, 2002). This challenge of violence disclosure can be further accentuated for people with intellectual disabilities. Disabled people are more likely to be abused by people providing them care (e.g., caregivers, family members) (McCormack et al., 2005; Sobsey, 2006). This can make some disabled people reluctant to report such instances (Akbas et al., 2009). People with intellectual disabilities are also less likely to be believed when they do disclose and sometimes have to remain living with perpetrators (Shapiro, 2018). In addition, the literature suggests that very few cases are actually addressed. For example, out of 1400 sexual abuse yearly reports against people with intellectual disabilities in the United Kingdom, typically only six percent make it to court, and one percent result in conviction (Byrne, 2018).

Although my research shows that those risks and harm were present in some of the participants’ accounts, in this context of increased risk, however, we should still ask ourselves whether it is right to deny disabled people access to an intimate life as a means for keeping them safe, or if there is perhaps a different path forward for a safe and satisfying sexual life for disabled people. People labeled/with intellectual disabilities are entitled to intimate citizenship (Ignagni et al., 2016), which refers to our “rights to choose what we do with our bodies, our feelings, our identities, our relationships, our eroticisms, and our representations” (Plummer, 1995: 17). People labeled/with intellectual disabilities have also consistently noted their desire to be heard and have their wishes respected (Bane et al., 2012; Fitzgerald and Withers, 2013).

It is equally important to note how disabled people are made vulnerable through everyday practices (e.g., not being allowed to choose where to live, what to wear, what to eat) that curtail their opportunities to practice decision-making on their own in the first place. Family members and service providers often struggle to balance protecting disabled people from risk and harm and respecting their rights to make their own decisions (including their right to make mistakes) in their intimate lives (Brown and McCann, 2018). I argue there are better ways of dealing with this vulnerability than simply shutting down opportunities for disabled people to share their hopes, perspectives, and experiences around sexuality. Protection should not be used as a silencing tool that precludes disabled people from their human right to sexual expression. For some participants, involvement in this research provided a first-time opportunity to speak openly about their romantic and sexual desires and dreams. Many had previously been discouraged, punished, infantilized, and reprimanded when discussing sexuality. This only made my responsibility as a researcher—especially not being judgmental—even more significant. It was vital for me to create a safe(r) space for participants to share their thoughts comfortably. In our conversations, nothing was “abnormal,” “odd,” or “taboo.” Furthermore, as a social group so commonly infantilized, it was important for me to treat the participants like adults who can understand their rights and choices regarding research participation. My job was to ensure information was delivered to participants in an accessible manner, such as using consent forms written in an easy-read format.

“Ethically important moments”

Ethics should undoubtedly go beyond the requirements and approval of Institutional Review Boards (Blee and Currier, 2011; Ellis, 2009; Librett and Perrone, 2010). Even if researchers follow procedural guidelines, as Ellis (2009) notes, “relational situations will come up in the field and in the interviews that will make their heads spin and their hearts ache” (310). Neither ethics committees nor ourselves can foresee all of the day-to-day ethical issues we will face during fieldwork (Blackman, 2007; Guillemin and Gillam, 2004). This is where the concept of “relational ethics” becomes particularly relevant to research as it requires us “to act from our hearts and minds, to acknowledge our interpersonal bonds to others, and to initiate and maintain conversations” (Ellis, 2009: 308). Guillemin and Gillam’s (2004) discussion on “ethics in practice” and “ethically important moments” is particularly relevant (264-265). During my fieldwork, I have encountered ethically important moments, and I strived to address them to the best of my ability. Next, I share some of those moments.

There is evidence that people labeled/with intellectual disabilities are sometimes given misinformation (either purposedly or unintentionally) about sexual identities, relationships, and rights to discourage them from engaging in forms of sexual expression (Löfgren-Mårtenson, 2009). In interviews, I have faced instances where participants shared incorrect information regarding their sexual rights, often from family members and direct care workers. For instance, one participant, a young man in his 20s, told me that people in Ontario, Canada, are not legally allowed to get married until they are in their 40s. However, the legal age in Ontario for getting married is 16 and older. On another occasion, a young couple with Down’s syndrome spoke about their choice not to have sex because they would inevitably get pregnant, and their child would also have a disability. In these moments, I felt responsible for answering those questions as honestly and accurately as I could. It would be unethical for me to knowingly perpetuate misinformation, especially when participants at times actively sought out answers from me, a person who they saw, in some way, as an “expert.” My main concern, however, was about how that could potentially cause some tension between participants and other people in their lives, people who they may depend on for their care needs. For that reason, I made sure to follow up with those participants after the interview via brief emails and phone calls to check on them. All participants reported positive feelings about having had an opportunity to share their perspectives and experiences and, thankfully, none of them experienced any conflicts following the interview.

Another common experience was when participants wanted to remain in touch with me after the interview. Considering the significant level of social isolation so commonly experienced by disabled people, their desire for connection should not be surprising. It was particularly hard for me to conclude our research relationship. “How can I simply say goodbye after someone just shared with me that they feel extremely lonely?”—I would painfully ask myself on my way back home. As researchers, we are often encouraged to maintain clear researcher-interviewee boundaries and form an exit plan. Yet, relationships can continue through activist and other community-based collaborative work (Santinele Martino & Fudge Schormans, 2018). Furthermore, as noted by McDonald et al., (2013), researchers’ relationships with disabled people can deepen their “understanding of the lived experience of intellectual disability and foster their commitment to pursuing inclusive, relevant, and sensitive research” (37). As a way to try and support participants in terms of accessing potential networks that could counter that isolation, I gave participants lists of local organizations, including service providers and self-advocacy groups that offer social activities and who I know are sex positive. I also offered to facilitate those connections if participants wanted.

There were also a few instances in which participants showed certain romantic or sexual interest toward me. For example, in one instance, when asked about their ideal partner, a participant not-so-subtlety looked at me from head to toe and clearly started describing me. At other times, I received compliments about my appearance or was asked questions about my relationship status. I approached these moments with kindness and respect toward participants while maintaining clear professional boundaries. I did not want to cause harm, especially to those who had just spoken about feeling extremely lonely and having low self-confidence. I am well aware that other sexualities scholars in disability studies have experienced similar instances (see, e.g., Liddiard, 2011) and this was not my first time engaging in this type of research. In a previous study, a couple with intellectual disabilities invited me to join them in a threesome sexual encounter, which I had to politely reject. In some of these instances, a subtle nod to my relationship status was enough to help me assert some boundaries. Certainly, being a man shapes the way these interactions unfolded. For women doing similar research, attempts to assert those boundaries may be challenged by participants (Liddiard, 2011).

Considering how people with intellectual disabilities are sometimes coerced in their everyday lives into partaking in activities that may not be of their choosing (Cameron and Murphy, 2007; Nicholson et al., 2013), it was important for me to ensure that potential participants did not feel that way in this research. Throughout the entire project, the decisions from disabled people were respected and prioritized. For instance, I had one mother who, though well-intentioned, contacted me saying that she wanted her son to participate in the study. She considered the study to be an opportunity for her son to talk about sexuality with a more “knowledgeable person.” Without hesitation, she then told me that she would “really encourage” her son to participate. Although I appreciated her gesture, I respectfully reminded her that it was her son’s decision whether to partake. Her son then opted not to participate, and his wish was respected. I followed a similar approach when recruiting through service providers and self-advocacy groups. Some organizations recruit participants within their organizations without providing full information about the study, but rather focusing on the compensation that is provided through research participation. I wanted to ensure people did not feel pressured to participate because a friend or staff member had encouraged them to do so. I reminded participants that it was their choice whether or not to participate in the study.

Holding back tears

Qualitative research is embodied experience, one in which researchers may be emotionally affected by their research (Dickson-Swift et al., 2009; Fitzpatrick and Olson, 2015). It was particularly difficult for me to listen to participants’ experiences with sexual abuse and harassment. It triggered difficult memories for me. I held back my own tears as I attempted to comfort participants. I count myself lucky that I have an incredibly supportive network of friends and colleagues who I could count on for debriefing. I have people around me to whom I could open up and cry. In addition to that, rather than keeping my emotions unrecognized, I have had the opportunity (and privilege) to process some of my own experiences with the help of a counselor and through journaling. Having that somewhat shared experience with some participants has made me a more aware (e.g., paying great attention to body language and purposedly respecting participants’ agency) and empathetic researcher.

For some participants, however, they had only recently been able to recount their experiences with a professional and work through those painful memories. In those cases, I made sure to follow up with these participants via phone calls. I also offered participants information about national and province-based organizations that provide free-of-charge counseling and supports for sexual assault and trauma survivors across different social identities (e.g., Canadian Association of Sexual Assault Centres, Ontario Network of Sexual Assault/Domestic Violence Treatment Centres, Ontario Coalition of Rape Crisis Centres). In Canada, at least, most universities have their own lists of sexual violence prevention and response resources available in the community, and most ethics review boards require researchers to share those resources with all participants. I feel extremely privileged that participants felt comfortable sharing those experiences with me. I was aware that some of the participants could get upset when sharing their experiences around sexual expression and practices, as some of these experiences can be painful to talk about. Following the advice and guidelines from the team at the Sexual Violence Prevention and Response Office at my institution, if a participant disclosed being in immediate danger (which has not happened to date), I would have to contact the authorities, meaning the police. This was communicated in my letter of information prior to the interviews. However, if the participant was not in immediate danger, I gave them a list of resources and the opportunity to facilitate that communication. It was extremely important to respect participants’ agency in making that decision, especially considering how experiences of abuse commonly involve the removal of that agency from survivors. In other words, I have listened to the wishes of participants themselves as much as possible.

Self-esteem was another topic often brought up by participants in interviews. This makes sense. As appropriately observed by Shakespeare (2000), “More than money, being sexual demands self-esteem” (161). Disabled people have been—and continue to be—“systematically devalued and excluded by modern western societies,” and, consequently, they are “often not in the right place to begin that task of self-love and self-worth” (Shakespeare, 2000). Many of my participants have shared their struggle with building up the self-esteem required to pursue intimate relationships. Mary, a disabled women in her early 30s, expressed, “I don’t think I’m worth it [...] [takes deep breath] one of my fears, it is a big fear, I will always be alone.” This statement was followed by tears rolling down Mary’s face and a pause in the interview. Some participants, such as Mary, identified themselves as having low self-confidence and as being “unworthy” of intimate partners.

Some participants spoke about how being single and struggling to figure out how to find an intimate partner was both “hard” and “sad.” On one occasion, Peter, a disabled man in his 30s who has never had an intimate relationship before, opened up his heart, “Being single, it’s hard to be single. It’s hard to be single. It’s not fair I’m single. That’s not fair, you know?” As he went on to share how being single makes him feel, he stated, “You know how I feel? Sad. I’m being single. Sad. I want to fix that. I want to fix that, okay? Fix it. I want to fix that for me.” As someone who is in a loving intimate relationship—something some participants asked me about—I could not avoid but feel sad about participants and their struggle to find love. Peter is a young man who, similarly to other participants, has never received any type of information or supports to pursue a romantic relationship.

At times, participants directly asked me for help getting access to services, getting sexuality-related information, and even finding intimate partners. Peter, for example, asking me for support during his interview, “Can you write that? Put, ‘I want to get a girlfriend.’ So, where can I go? How can I make it happen? Can you tell me? Can you help me? How can I make this happen?” There is a clear sense of urgency in Peter’s stream of questions and request for information. I recognized the importance of articulating to my participants, right from the start, what might (or might not) realistically come out from this research. As Ashby (2011) notes, it is important for qualitative researchers “to be very clear about the goals of the project and the reasonable potential outcomes.” In those cases, I relied on my strong relationships with community organizations and self-advocates with disabilities for contacts and resources that I could share with my participants. Of course, deep inside I still wished that I could have done more to support those who struggle to find intimate partners and navigate sexuality.

Conclusion

When I first started researching the intersections of disability and sexuality as an undergraduate student, I realized I had to deal with my own discomfort around talking about sex and sexuality if I were to do ethically and respectfully do this work. Growing up with an older sibling with a disability, neither of us received “the talk” from our parents nor much sexuality-related information from our schools. Doing this type of work has challenged me, in positive ways, to interrogate my own (dis)comfort with talking openly about sexuality. It has (thankfully) forced me to learn about evidence-based information related to sexuality, to build a refined vocabulary, and get to a position where I could say the word “sex” with the same tone as when I say “food.” This work has undoubtedly enriched my own life as a sexual being and sexualities scholar.

At the same time, my field experiences have presented me with ethically important moments, some of which I had not predicted. In those moments, I had to find ways to ethically and meaningfully navigate participants’ emotions and feelings, as well as my own, while recognizing some of the structural ways in which isolation, loneliness, and rejection had been imposed onto participants. At times, I felt somewhat powerless, only being able to guide participants to potential community-based supports. Although I recognize that for some participants the “mere” fact of being recognized as a sexual being and having a safe(r) space to share their experiences with love and intimacy was already significant to many participants, I still felt like I wish I could do more to help change their individual circumstances. Doing this type of research remains an emotional process for me. Nevertheless, I concur with Gilbert (2001) who has articulated that research should be experienced “both intellectually and emotionally” (9).