Abstract

There is an increased interest in including people with intellectual disability labels in social science research. The ethical conundrums involved in doing so are far-reaching, and labelled people remain chronically excluded from knowledge production on the basis of medicalized conceptions of competence commonly espoused by research ethics boards (REB). Here, I critically reflect on my experience making strategic decisions about accessing a writing group made up of labelled adults for my doctoral research. I respond to Kate Holland's 2007 question: "whose interests are served by current ethics review standards and what do they exclude?" (p. 904) by juxtaposing current ethical standards of critical disability studies with my REB's concerns about three issues: prospective participants' competence; their cognitive abilities; and a lengthy recruitment timeline. My reflections on these issues speak to feelings of regret and resilience, and what it can mean to take lessons from engaging in institutional ethics in an unsatisfactory way. This account offers snapshots of decisions leading up to a research project, and the ways in which ethics review frameworks remain rooted in biomedical epistemological biases that serve outsider researchers and exclude labelled people from research about themselves.


Introduction

Between 2013 and 2016 I proposed, and later carried out, doctoral field work in a weekly, drop-in writing group composed of ten adults carrying intellectual disability labels. 2 Here, I offer three snapshots of negotiations involved in applying for institutional ethical approval to observe this group and photograph some pieces of their writing to support our group-based analysis. Overall, my experience reflects the perpetual exclusion of people from research when they do not fit normalized understandings of competence (Thompson, 2002, p. 96). In her influential work, The Vulnerable Observer: Anthropology that Breaks your Heart, Ruth Behar (1996) cautions against the aftermaths of field work—moments when researchers walk away from people, returning to our desks to narrate an analysis as if we could ever fully. "Our fieldnotes become palimpsests, unless plumbed for forgotten revelatory moments, unexpressed longings, and the wounds of regret," she writes (p. 9). This article is an attempt to remember my own anxiety-riddled decisions—two "wounds of regret" and one small success—that extrapolate on the ways in which institutional ethics procedures create barriers to including labelled people in knowledge production about themselves.

Below, I chronicle and reflect on three of my research ethics board's (REB) concerns about my application that I still struggle to process: first, compromising around medicalized conceptions of competence; second, abiding to the REB's expectations of what the research should look like based on their perceptions of participants' cognitive abilities; and, finally, advocating for a lengthy recruitment and informed consent process. By relaying three moments of deliberation that occurred before my research began, I speak to the ways in which current ethics review frameworks remain rooted in biomedical epistemological biases that best serve researchers and lead to barriers in including intellectually disabled people in research about themselves. All in all, I do not profess to offer best practices for ethical research involving labelled people. Rather, I aim to add my experience to the growing body of literature surrounding ethics-related considerations for research with labelled people.

Background and Rationale

It is well known that research ethics committees are highly bureaucratic (Robson & Maier, 2018), and that research ethics have traditionally been regulated through positivist orientations (Cannella & Lincoln, 2018). With these positivist foundations in mind, it is unsurprising that those overseeing institutional ethics protocols may not understand why some researchers aim to privilege disabled and mad people's roles in knowledge production about themselves (Gustafson & Brunger, 2014; Martino & Schormans, 2018; patterson, 2008; Thompson, 2002; Vanderkinderen et al., 2013). In response to her own thwarted bid to research alongside c/s/x (consumer, survivors, and ex-patients) folks, and in response to Art Bochner's earlier provocations about the academic and personal split, Kate Holland (2007) asks: "whose interests are served by current ethics review standards and what do they exclude?" (p. 904). This article meditates on Holland's question by drawing from my experience attempting to compromise between the ethical standards of critical disability studies and concerns voiced by my REB that reflect standard institutional ethics protocols that tend to undercut disabled folks as inherently vulnerable people for whom research might be "too risky" (Van den Hoonard, 2002; Gustafson & Brunger, 2014; Martino & Schormans, 2018, p. 2).

Yet, research always involves risk (Holland, 2007, p. 899). And the undermining of disabled people's role in research follows cultural discourses and understandings of intellectual disability as different, inferior, undesirable, bad, and tragic (Stefánsdóttir & Traustadóttir, 2015; Carlson, 2010, p. 10). Following Lucia Carlson (2010), such devaluation links to discussions of intellectual disability as an ethical discourse in its own right: are intellectually disabled people eligible for research participation at all? Such a question ignores the reality that while research involving disabled people may, at times, be risky, this risk must be balanced with participants' right to participate in risk and contribute to knowledge. In this sense, casting intellectual disability as an ethical problem and denying these groups such participation is also risky. And, as Will Van den Hoonard (2002) remarks, while some populations are indeed vulnerable and at risk of being exploited by researchers, "in some cases this judgment cannot stand the test of reality" (p. 14). Therefore, those doing disability-related inquiry come up against weighty, risk-averse cultural discourses about intellectual disability and must be prepared to advocate for those who are too often "squashed into a medicalized narrative" (Richards, 2008, p. 1719)—this includes researchers like me, who are tied to the institutional ethics protocols that govern their work beginning in the earliest stages of their careers.

The effect of this institutional binding is significant because it may drive researchers to (intentionally or not) (re)produce disabling institutionalized expectations and barriers to engagement with research (Evans et al., 2009, p. 899; Rapley, 2004; Van den Hoonard, 2002). As Holland (2007) explains, "the current ethics review framework is by no means a rubber stamp for ensuring good and fair research, but may in fact be a barrier to it" (p. 911). Here, with this paradox in mind, I hesitantly and reflexively unknot some of the ethical dilemmas inherent in my application to conduct doctoral research with people labelled with intellectual disability. Some of the decisions embedded in this process served both me and the participants while also leading to labelled people's unwitting exclusion from knowledge production.

Overview of Literature: Ethical Concerns in Disability-Related Research

Ethical conundrums surrounding disability-related research involving human subjects are far-reaching. The field of critical disability studies is rife with conversations about the ethical intricacies of such research, and there is no consensus on the "right" way to do this type of work. To begin, there is ongoing debate about whether it is ethical to do research with humans at all (Barnes, 1992). Arguably, research about labelled people, and debates surrounding such research, continue to benefit researchers the most (Barnes, 2003; Leduc, 2016). Disabled people have been historically exploited and over-used in research and, for this reason, some researchers call for the development of text-based inquiry that does not directly involve people. Sharon Snyder and David Mitchell (2006) point out the institutional nature of people-based research: if universities are credited with producing influential cultural beliefs about disability (both medical and social), they can also be credited with producing career-"experts" whose work makes up, justifies, and validates prevailing beliefs about disability (p. 19). Such "experts" represent and re-code the eugenic roots of universities (Dolmage, 2019) and are an extension of the "helping professions"—those that, as Madeline Burghardt (2019) explains, are historically dependant on disability for their own legitimacy and survival (pp. 26-27). Still today, across many fields and regardless of ethical jurisdictions, labelled people are considered "perpetually available" objects of research for normative explanation (Snyder & Mitchell, 2006, p. 28). As a field of study, disability studies is not exempt from this reliance on disabled people, and its researchers are among those who create and hold authority on the topic of disability.

On the other hand, it is possible to make the case that disability-related research must involve people. As Alan Santinele Martino and Ann Fudge Schormans (2018) remind us, the inclusion of disabled people in research responds to the historic mantra: Nothing about us without us. This stance follows the understanding that disabled people's experiences have long been excluded from knowledge production (Berger, 2014; Couser, 2001). This exclusion is the result of systemic ableism, wherein disabled people's perspectives are undervalued and therefore absent. Some researchers feel it is time for disabled people to "voice" their experiences and understandings of the world, to participate in knowledge production about themselves (Correia et al., 2017; McDonald et al., 2013). Such praxis relies on what Julie Minich (2016) calls a "methodology of disability studies" that takes many shapes and, as Ann Fox (2017) explains, counts on a field that is "more critical than ever" (unpaginated). For example, recent literature about people's experiences of institutionalization in Canada points to the ways in which survivors' stories are hidden from national historical accounts, and researchers are currently working on creative and critical methods of supporting survivors in uncovering and representing these stories (Burghardt, 2019; Rossiter & Clarkson, 2013; Rossiter & Rinaldi, 2019). In some of this research, fact-gathering is not the goal (halifax et al., 2018, p. 223). Rather, the focus is on a critique of traditional empirical notions of rigor and generative methodological practices appropriate for "as-yet-unknown" knowledges from labelled participants (p. 217)

Further, foundational to the field of critical disability studies is the work of those who monitor ethical slips and offer important advice on how to shape research with people. For example, Colin Barnes (2003) suggests researchers consider accountability to organizations run by disabled people and attend to experiences of ableism that inform disabled people's lives (p. 7, 10). Efforts to include disabled people in knowledge production are also sometimes guided by principles of transformative, participatory and emancipatory research aimed at social change (Gustafson & Brunger, 2014; Johnson et al., 2014; Jones, 2008). Some researchers strive for accessibility in research (Price, 2012), adopt collaborative or partnership approaches (Strnadová et al, 2014), draw on legacy methods such as life history collection to construct counter-narratives (Stefánsdóttir & Traustadóttir, 2015), and/or work with new community-based arts approaches (halifax et al., 2018; Rhodes & Langtiw, 2018), education journey mapping (Annamma, 2017), and critical twists on interviewing people using augmentative and alternative communication (Teachman et al., 2017)—all aimed to some degree at espousing better ethical practices aligned with the promise of disability's valued contribution to knowledge production. These examples speak to the upswing in interest in the evolving politics and practices of research involving disabled people (Lester & Nusbaum, 2017). The presence of disability in research, and disabled people as (and alongside) researchers, has the potential to reshape, and even crip, qualitative work by continually heightening standards of accountability in the field.

Notably, there is also increased interest in research specifically involving intellectually disabled people. In a wide review of descriptive and empirical studies that focused on ethics-related considerations for how to conduct research with labelled people, Katherine McDonald & Colleen Kidney (2012) ask what the scholarship tells us about "how we ought to do research" with people assigned intellectual disability labels (p. 28). McDonald and Kidney pull several strategies from their collection of literature: ensuring research benefits participants; addressing relationships during production; encouraging participants to consult with family members to minimize coercion, among others. Another way to advocate for the inclusion of intellectually disabled people in research is to challenge institutional controls of research production—though this is something researchers are sometimes unable (or unwilling) to do (Barnes, 1992). However, some researchers advocate for ways forward that forge such resistance: educating ethics committee members about ableism and disablism so they might identify it in their praxis (Martino & Schormans, 2018); challenging rather than maintaining assumed power differentials embedded in methodology (Gustafson & Brunger, 2014); embracing a sociopolitical research ethic that considers affect, including care for ourselves and others (halifax et al., 2018; Vandekinderen et al., 2014).

Indeed, disability-related research is couched in debate about the many ways to approach work with disabled people, all of which rely on cultural and historical context. Therefore, there is no one "right" way to do research with disabled people, even under the guise of standard institutional ethics protocols. Rather, there are a myriad of ways to do this research, most of which rely on stitching together context and guidance from the field about how to re-imagine what it means to do ethical work. As McDonald and Kidney (2012) explain, "…researchers need to be more than good scientists. We need to demonstrate sensitivity to the ethics that permeate our work" (pp. 35-36). Sensitivity to the ethics surrounding my work prompts a return to Holland (2007), who asserts that ethical approaches to research are not only about including people in research, but also about both researchers and REB committees interrogating the underlying epistemological biases that would exclude certain people in the first place (p. 910). As I recall my doctoral work, I remember these epistemological biases slipping into my REB application and I notice how these biases served me and, at times, the participants, while simultaneously excluding participants from ethical considerations about themselves.

For me, as an outsider who does not carry an intellectual disability label, involving disabled people in research is necessary precisely because the people I work with are often excluded from knowledge creation about themselves. They carry heavy histories of violence, institutionalization, and infantilization that surface across the literature (Burghardt, 2019; halifax et al., 2018; Rossiter & Rinaldi, 2019). And, their input has historically been rejected by the academy (Goodley & Moore, 2000). These people are commonly outfitted in cultural locations such as institutions where they do not normally have access to researchers. And, they are often understood to be without language and thus incapable of telling their own stories (Prendergast, 2010). To this point, many are considered "non-verbal" (regardless of the limits of supposed verbality and the possibilities of its re-imaginings) and live without the aid of communication technology; they are difficult for outsiders to understand and therefore easy to overlook. To borrow Patti Lather's (2007) words, I believe research involving intellectual disability forces researchers to confront "things that are easy to walk over" (p. 54). As such, my aim in this writing is to engage in critical self-reflection of my own decisions around the ethics application process, which is often set up as a precursor to the meatier findings of the research itself. Rather than understanding institutional ethical approval processes as a means to an end, I posit that reflecting on this stage of the research illuminates the intentions and motivations behind working with labelled people. Reflection also reveals the messiness of research, hopefully offering more honest insight into its undulating, relational processes than a polished report focused primarily on its results. Reflection on imperfect empirical processes can give us a glimpse into what it really means to do research alongside labelled people, muddying the scientific approach's usual roadmaps through research. That is to say that self-reflection requires that we observe ourselves and look for moments of learning rather than overstepping them in the interest of objectivity (Franks, 2016, p. 49). And, following in post-structural feminist traditions, reflecting on research is one way to assess what may have been easy to overstep in my own work.

Overview of the Research

Research Methods and Participation

The proposed methods for my doctoral research involved participatory observation, semi-structured interviewing, and photography in a voluntary expressive writing group of intellectually disabled adults. With attention to the benefits of collaborative research involving intellectually disabled people (Ellem et al., 2008; Fudge Schormans, 2014; Gustafson & Brunger, 2014), I proposed that for 24 weeks I would observe, write alongside, and photograph some of the work produced by an already-established group. Everyone invited to participate were adults labelled as having intellectual disability who were already enrolled at a day centre and were familiar with the writing group that I had voluntarily run for a year. People self-selected to join the research based on their willingness to participate in expressive writing, to be recorded with a voice recorder, and to have their writing photographed upon request. Activities would carry on as usual, but now under the guise of research. Those who did not self-select for research could still be part of the writing group but none of their participation would be recorded or used in my study. Ultimately ten people out of approximately thirty agreed to participate in research.

Purpose of the Research

The purpose of the writing group was to make space for creative engagement that was neither rehabilitative nor therapeutic—to experience writing as an expressive gesture in and of itself. In adding a research element, the group continued to be a space for expressive writing of any type including that which does not subscribe to normative understandings of narrative. Here, I stretched the meaning of the word "writing" to refer to the building of any text using any creative method, such as using magnetic words to form sentences on a metal board, silently drawing words in the air using a finger, and/or using a voice recorder to replay an oral story. To honour the already ongoing relationship this community allowed me to build, I made few changes from our collaborative, non-research routine (Schormans & Martino, 2018, p. 2). The research aimed to throw light on the ways in which writing transcends normative notions of literacy and creates something more in tune with the socio-cultural phenomenon of intellectual disability by observing methods of expression participants engaged in already, rather than trying to somehow repair their writing or make it better. The purpose of the writing group was to privilege embodied, non-normative discourses, and the purpose of the research was to observe how making space for this type of writing can allow for intellectual disability to become new terrain for meaning-making. In other words, this research aimed to understand "the person as process" by observing and writing alongside people in multiple ways that were neither therapeutic nor rehabilitative (Davies, 2000, p. 38, 54). My dissertation draws on field notes from the research stage of this group to chronicle several lived experience moments, which are rooted in a phenomenological analysis of how writing and intellectual disability can be co-constituted processes.

Interactions with the Research Ethics Board

On September 3, 2013, I submitted my application for ethical approval for this research. Two weeks later, on Sept. 17, REB representatives responded with 18 concerns about my proposed research. These concerns were largely administrative and seemed reasonably negotiable under the guidance of the Canada's Tri-Council Policy Statement (TCPS): Ethical Conduct for Research Involving Humans. However, three of the REB's concerns disturbed me, and led me back to Holland's (2007) question of whose interests are best served by ethics committees, and what is excluded (p. 904). In some instances, I negotiated a response that, upon reflection, I believe compromised critical disability studies' standards of ethical behaviour in order to pacify the REB's biomedical expectations of what it means to treat (what they called) a "special population" ethically. Here, I expand on how these concerns, and my reactions to them, led to moments wherein participants' interests were underserved in research.

Issue 1: Capacity to Consent and Competence

The first matter concerns capacity to consent as it relates to the concept of competence. "I understand that I must choose my participants on the basis that [they] are competent people," I wrote in my REB application, parroting what I understood to be medical language that aligned with REB processes. The REB representative responded with this question:

"What is the evidence that informs your 'professional intuition' that the group members are all competent, and able to understand the nature of the research project and what it means to act and leave the group at any time, returning if and when they choose to. …?" (Sept. 17, 2013)

I was not surprised by this question because, as the second edition of the TCPS (2018) outlines, assessing capacity to consent means ensuring that prospective participants understand the nature of the research as well as the foreseeable risks and benefits to their participation. This question is significant in securing the safety of participants, ensuring empathy for participants, and assessing participants' interpretation of research situations. Yet, sitting alone in my home office reading this question, my stomach knotted at the familiar ring of ableism encoded in the REB's language.

I realized that the REB's query echoed my instigation of such medicalized language—defining people as "competent." By trying to earn the REB's favour by slipping in a mention of competence as a qualifying factor for participation in the first place, I recklessly reproduced competence as a measurable variable of human type. Competence depends on the false notion of the incompetent Other. Along a more ontological vein, Mike Evans (2009) and his co-authors ask, "why would research with 'Others' mean they are no longer produced as 'Others'?" (Fischer, 1997, p. 4 in Evans et al, 2009, p. 899).

Any compliant answer to the REB's above question assumes, and relies on, my willing and accurate assessment of participants' competence rather than an assessment of the nature of my proposed research. It also implores the researcher to somehow demonstrate institutional qualifications ("professional intuition") to judge potential participants as in/competent. Assessing capacity normally involves consideration of the complexity of the choice being made, the circumstances surrounding the decision, and changes in potential participants' ability to make decisions. Such questions are useful both in allowing REBs to do their due diligence, and to opening up questions of my own culpability: what were the consequences of my inherent push to participate in the REB's language of competence and, as follows, "professional intuition"? In so doing, did I adopt the role of expert and decree authority over potential participants, privileging the REB's perception of them rather than their perceptions of themselves? If so, this alters the power dynamics in the group—I have gone from co-writer and researcher to expert with "professional intuition" without participants' knowledge or permission. I have impinged upon their ability to define themselves on their own terms before the research has even begun.

Such moments of concern are common for researchers seeking institutional ethics approval to work with labelled people. Others have recorded ableist feedback given to them by ethics review committees (Holland, 2007; Schormans & Martino, 2018). For example, Diana Gustafson and Fern Brunger (2014) offer a critical reflection on the effect of an REB's conceptualizations of vulnerability in their participatory action research:

"Members of the disability community perceived that the researchers (and their university) were labeling them as vulnerable (read: broken; not capable; people in need of protection). These beliefs…were in direct opposition to the beliefs the community-based partners held about themselves: that they were empowered and autonomous agents" (p. 999).

Such blatant differences between REB perceptions of disabled people and disabled people's perceptions of themselves represent an immediate barrier to reciprocity and puts a sour taste on relationship-building (p. 1002). These tensions are known to discourage research production (McDonald & Kidney, 2012, p. 33). Earlier literature, as reviewed by McDonald & Kidney (2012), points to two main concerns: first, that vulnerabilities stem mainly from concerns about ability to make informed, voluntary decisions; and, second, concerns that intellectually disabled adults may be systematically excluded from research (p. 27-28). Given the experiences of researchers before me, it seemed unsurprising that the REB wanted evidence of participants' competence in order to assess their perceived level of vulnerability in my research. Yet, I was left with a dilemma: people could be included in research only if I could prove them competent enough to make informed, voluntary decisions. If I could not, they might be read as vulnerable and thus excludable from knowledge production about themselves.

Setting aside my initial, misguided slip into the terrain of competence, I was also uneasy about what the REB might mean by "professional intuition." I sensed an overlap between competence and vulnerability tied up in a conflict of representation and an inherent power imbalance. By calling up the word "competent" in the first place, I had unintentionally given the REB permission to re-position me as competent in relation to the labelled people I wished to work with who were being read as inherently incompetent. I had come up against a paternalistic assumption that provoked the university ethics committee's concern, and, as Holland (2007) writes, the concern itself no longer seemed ethical (p. 895). This notion of "professional intuition" paired with participants' assumed incompetence and prospective vulnerability calls up the "ideological illusion that the knowledge gained through professional expertise and research is more valid than experiential knowledge and first-person perspectives" (p. 896). I had a choice: I could either accept these assigned identities and their ableist implications and proceed with the research or resist them with the cost of excluding intellectually disabled people from the research.

Not wanting to extinguish the research project just yet, I chose the former, persisting with the word "competence" and responding to the REB as if "professional intuition" was somehow an understandable concept that I naturally embodied. I wrote:

"… the evidence that informs my professional intuition that the research group members are all competent and able to understand the nature of the research project and what it means to take action and leave the group at any time … spans beyond institutional qualifications and into my personal experiences living and working alongside people with intellectual disabilities."

I suddenly found myself no longer in the realm of nothing about us without us; my acquiescence to the REB's request put me outside of the ethical standards outlined through critical disability studies. I was aware that with this response I was participating in ableist understandings of competence (and, by extension, vulnerability). Such understandings speak to essentialized understanding of humanness—as though competence is a quantifiable personal attribute that persons "carry around with them" to be uncovered by researchers (Rapley, 2004, p. 50). Assumptions about defective competence are often assumptions about practical performance—such as "what it means to take action to leave the group"—rather than understandings of an individual's internalized, abstract knowledge. Mark Rapley's (2004) writing is particularly relevant in this area for his linkage of competence with morality and truth. As Dan Goodley and Rapley (2002) explain, "truths do not emerge out of thin air. They are tied to particular institutions (and related research practices) such as medicine, psychology and social work—the 'psych-complex'" that local research ethics protocols rely upon to understand disability and validate researcher claims of participant competence (p. 132).

I wonder, now, if it would it have been acceptable or effective of me, as a student, to query the meaning of "professional intuition" or to explain that my "professional intuition" stems from a critical disability studies paradigm that considers disabled people disadvantaged by positivist research ethics protocols. I also could have responded by explaining that a wider problem might be my own incompetency—the unknown-ness I was intentionally launching toward—in understanding silent and otherwise non-normative modes of communication. However, at the time of my institutional ethics protocol application, I held myself back from any of these resistive explanations because I felt as though the acceptance of my application might be worth this compromise. It seemed as though the REB expressed concern that the writers I planned to research would be unable to demonstrate, articulate, and possibly even understand discomfort without my "expert" interpretation of their behavior. I wondered if the writers I hoped to work with would be excluded from participating in knowledge production about themselves if I could not prove their competence by calling up my apparent "professional intuition."

I turn to Holland (2007) again to ask who these concepts of "competence" and "professional intuition" serve, and what they exclude. In this instance, predictably, only I am served and when my research ethics protocol upholds ableist notions of competence while keeping the participants' vulnerability up for question in the minds of those serving on ethics review committees.

Issue 2: Perceptions of "Cognitive Ability"

The REB was also concerned that writing might be an upsetting activity for people whose perceived "cognitive ability" seemed so low that they may not display signs of distress. I countered this suggestion by pointing out that participants may speak, write, or think about thoughts of discomfort in the same way one might in any research project. After all, research always involves risk (Holland, 2007, p. 899). Here, the REB requested an outline for each writing session, which was, for me, an imaginative task as the group did not abide by any such schedule; we wrote freely, imagining stories and generating ideas on-the-spot. I agreed to planned activities but kept the plans vague to preserve our flexible and improvisational approach (Price, 2012). I wrote out a suggested structure for each of the 24 weekly research sessions. For example, I suggested the twenty third week be structured as follows:

Using the example of a scheduled session, below, the researcher might attempt to open a conversation about a recent, specific instance in a story and how it emerged in the writing — this type of question is based on an experience and/or a moment rather than on generalizations about the story itself.

Week 23 – 9:30 a.m. to 11:00 a.m.

  1. Greetings and check-in
  2. Review of "Things to Remember" section of informed consent form
  3. Activity: Choose some excerpts of your own writing that are meaningful to you and discuss why.
  4. 10:30 a.m. break
  5. Activity: Analysis continued
  6. Check-out

This weekly schedule was written out for the benefit of the REB. I had never before asked potential participants to adhere to a writing schedule with firm parameters and suspected that this blander, prescriptive approach not be well received by the group. I had worked with this writing group for one year prior to the research—long enough to know that there was a preference for freestyle writing and a general detest for structured writing, perhaps because structured sessions resembled the very literacy training the group was designed to avoid. However, one of the inherent implications of this kind of concern from the REB is that the researcher and her unstructured approach automatically poses a risk to participants (Holland, 2007, p. 898). Therefore, I did not feel it would strengthen my case under any circumstance to reveal my suspicion that such schedules would be entirely ignored by participants.

Close up, this suspicion later proved true. One participant, Mary, attended the writing group regularly but rarely engaged in pre-planned writing activities. My field notes reveal that she moaned and mumbled when I began our sessions with greetings a review of our informed consent processes. She repeatedly told me, through various turns of phrase and body language, that my planned activities were "stupid" or "silliness" and that she should be allowed to write what she wants for an uninterrupted hour or so (Feb. 4, 2015). Here, I identify a failure to act on my part. I succumbed to the REB's request to write out, and abide by, a schedule even with a suspicion that a schedule might be undesirable to some participants.

Though I do not believe Mary experienced distress because of this scheduling, I do believe the schedule annoyed her and became a barrier to her participation. This had a domino effect when, later, Mary attempted to leave the writing group. Our ongoing process consent procedures made clear that Mary could come and go as she pleased, yet day center staff insisted she stay in the room and finish our writing activity because it was scheduled to end at a certain time, rather than whenever Mary felt she was finished writing. In that moment, I was able to use my institutionalized ethics protocol agreement to advocate for Mary's departure from the group (which undoubtedly speaks to the necessity of the protocol). Yet, I believe the scheduling that I agreed to in the early stages of the institutional ethics application process led to this conflict and could have been avoided had I responded to the REB using my experiential knowledge rather than trusting the REB's expectations of what a group writing with labelled folks should look like. In this instance, my own preoccupation with recruitment and informed consent overshadowed the important discussion of who is served by the research, leaving Mary excluded (McDonald & Kidney, 2012, p. 36).

Issue 3: Recruitment and Informed Consent

The final snapshot of this ethics application process zooms in on the issue of a lengthy recruitment and informed consent. In my original application, I suggested a three-week recruitment phase that would correlate with our weekly writing group meetings. I proposed that in the first week, potential participants would be given a flyer with a detailed description written in plain language. I would invite them to participate in the research. In so doing, I would explain the flyer and the conditions of the research with the support of the day center's director. During the second week, each interested person would be given an informed consent form written in plain language. The form outlined the general purpose of the study, its foreseeable risks and benefits, and all relevant contact information including an office phone number to reach me 3 in the event of any follow-up questions from potential participants or people in their support networks. I would explain the form to each person and go over the concepts of voluntary and process consent, with particular emphasis on participants' right to withdraw from the research at any time but still continue writing with the group. The same week, potential participants would have an opportunity to take the form home to discuss it with people they trust. Then, during the third week, I would explain the research for a third time and collect any informed consent agreements.

In response, the REB representative asked if I had suggested a three-week recruitment process "due to the cognitive abilities of potential participants" (Sept. 17, 2013). This paternalistic phrasing worried me. The Board's concern that a three-week recruitment process could be a response to "cognitive ability" suggests an assumption that the potential participants are too slow to make immediate decisions. The REB seemed to be suggesting that although they required weeks of briefing on the project, potential participants would be expected to perform on-the-spot consent-based decision making.

I am aware that it is vitally important for participants to understand all information provided by me about the research (Stefánsdóttir & Traustadóttir, 2015, p. 373). And, like Martino and Schormans (2018), I was prepared to acknowledge inherent risks to participating in research (p. 2). The research and its risks must be explained in clear, accessible language and through processes that allow sufficient time for participants to assess the research request and make an informed decision, whether that be singularly or with the support of others. Further, in some circumstances, consent must be negotiated with participants' support networks. Labelled people are rarely offered opportunity/autonomy to participate in non-rehabilitative or non-therapeutic writing (Prendergast, 2010), and I expected that they and folks in their circles might have questions about the project. Therefore, my informed consent materials encouraged readers to ask questions over time. And, as in research involving non-labelled people, this timespan made space for people to be in conversation with me if necessary, and to make informed decisions based on how they felt they may or may not fit into the project. The three-week recruitment phase was not designed to reflect the "cognitive abilities" of participants; rather, it was designed with an understanding that consent should never be rushed.

In my response to the REB I attempted to explain that because I only meet with potential participants once per week, a three-week recruitment process would allow people the space to make informed decisions. It was important to remind the REB that my potential participants did not have access to conventional means of communication (such as email or telephones), meaning that in-person interactions would be crucial to the recruitment process in the likely event of follow-up questions. I responded:

While three weeks may seem like a long time, it is important to remember that I only have contact with potential participants once per week. The participants do not have access to me, nor I to them, via email, telephone, or any other method …. The three-week routine is meant to give people ample opportunity to be introduced to the idea, and opportunity to develop any questions. The goal here is not to put anyone on the spot …. It is important to remember that my committee, the REB, and [organization] staff have been familiarized with this project for months or longer, and I feel it is only fair and respectful to allow participants some time to get used to the idea, formulate some questions, and be in touch with me, my supervisor, an REB representative, or [organization] staff — which could, in some cases, be conversations that need to be scheduled in advance.

I also argued that people need time to understand foreseeable risks and benefits of the project, and to evaluate whether participation is in their best interest. Despite the time restrictions on my project, I did not compromise on the three-week recruitment process because I did not feel confident that anyone could provide free and informed consent if rushed. Ultimately, the REB agreed with my assessment. This was, at least, one do-able act of resilience that felt like a success.

Conclusion: Beginning Research

After responding to the REB's 18 email-based inquiries, my research could begin. Throughout the research I was keenly aware that institutional approval for ethical research does not equal ethical research, but simply assumes researchers to be ethical (Somerville, 2006, p. 5). I worried about how the research would unroll and took steps to ensure that my praxis would follow ethical standards outlined in critical disability studies. However, it is the moments leading up to the research that that have me straining to respond to Holland's (2007) question: "whose interests are served by current ethics review standards and what do they exclude?" (p. 904)

Upon reflecting on three instances of ethical precarity foregrounding my research, I sense that my, rather than the participants', interests were served by current ethics review standards. Though there is no "right" way to do research with labelled people, and no "right" way through these ethical dilemmas; returning to these moments helps me track missteps that are both individual and systemic. I can situate my experience in complicated ethics frameworks that are heavily biased toward positivist paradigms and medicalized understandings of disability (Holland, 2007).

Reflection and Recommendations

Attempts at advocacy in the face of institutional ethics protocol are not straightforward, and I do not claim to name any best practices to this end. Here, my intention is to add my experience to the growing body of literature surrounding ethics-related considerations for research involving labelled people, and to urge researchers to critically reflect on moments wherein we are entangled in ableist biases of ethics review processes.

I am aware of the expectation that this type of writing ought to offer recommendations. At the same time, recommendations based on critical self-reflexivity ironically confirm the legitimacy of my authority—my "professional intuition," if you will—over the research and its participants. My instinct is to leave this experience open-ended as a way of subtly challenging prevailing modes of knowledge. Yet, it is probable that readers expect some take-aways for improving the REB process—some ironic claim to "competence" to top off this critical self-reflection (J. McGonegal, personal communication, April 1, 2019). If this is the case, here is some purposely pliable advice for those researching with intellectually disabled people:

  1. Resist the urge to speak an REB's language to earn its favour. In my experience, it can be expedient to take on the role of "competent" expert with whom the REB can converse and negotiate. This approach may even be necessary for achieving institutional ethical approval, but it comes at a cost. Playing into institutional understandings of others reinscribes ableist norms that work against people, such as interconnected notions of (in)competence and vulnerability—both barriers to labelled people's participation in research. Ultimately, role-playing as "expert" serves only to benefit the researcher and disavows disabled people's hard-earned place in creating knowledge about themselves. The field of disability studies has work to do in continually challenging the ways in which traditional notions of competence continue to inform mainstream notions of ethical praxis and stepping outside of institutional ethics boards' competence discourses can be one way to participate in this wider resistance.
  2. Ask prospective participants what they want and need from the research during the ethics application process. This point seems obvious, but when a REB makes suggestions before the research begins—in my case, such as that of a writing schedule that was ultimately upsetting for Mary—it can be easy to assume that the suggested interventions may work in the best interest of the participants later. I assumed the participants in my research would not want to follow a writing schedule, and though this later proved true in some ways, it is possible people would have been open to the schedule had I asked. More importantly, had I asked potential participants for their thoughts on the REB's suggestion, I may have been better equipped to respond in ways that benefitted the labelled people in the field rather than simply pushing the schedule forward.
  3. Do not rush consent. Confining consent to a one-time informed consent form is problematic enough because this process impinges on more accessible options of process consent, wherein consent can be given and withdrawn throughout a research project. However, if a one-time informed consent form is the only tool you have at hand, allow time for potential participants to work through the form and to communicate with you and others about the research in their own way. Making space for decision-making time is one way to advocate for labelled people's role in research.
  4. Fess up to the mess. Currently researchers are the conduits between labelled people and a knowledge industry stepped in academic ableism (Dolmage, 2017). Hopefully, someday soon, more intellectually disabled people will be leading research and more deeply involved in cripping knowledge production. In the meantime, I am suspicious of other outsider researchers whose work with labelled people shines methodologically and ethically spotless; research is necessarily relational and messy. Researchers must reveal the mess if we are to become more honest about what it takes, and what it means, to do research alongside labelled people. Reflecting on the early stages of research throws light on the realities of epistemological biases that exclude disabled people in the first place.

The advice above are piecemeal lessons directly related to the so-called "wounds of regret" embedded in a student experience I am still processing, and as such risks individualizing ethical problems (Behar, 1996, p. 9). To be clear: it will take more than any one researcher's individual actions to properly interrogate the underlying epistemological biases that continually exclude certain people from research (Holland, 2007, p. 910). More broadly, we—as people involved in critical disability studies and neighbouring fields—must continue to struggle toward and advocate for methodologies that meaningfully include labelled people at the very beginning stages of research as ethically as possible based on our current contexts.

We might also ask ourselves some questions that tug on the epistemological biases of inquiry: what might an application for institutional ethics approval look like if labelled people were the primary authors? What might ethical research look like if intellectually disabled people were included in developing and enforcing these standards? There is a need to re-assess ethics review committee's medical approach to disability, and several researchers have made suggestions to this end (see Jones, 2008; Morgan et al., 2011; Martino & Schormans, 2018, p. 2; Gustafson & Brunger, 2014). In the meantime, I offer my experience as a cautionary tale that responds to Holland's (2007) pivotal question with this answer: intellectually disabled people's interests remain underserved by current ethics review standards, and the result is the chronic exclusion of labelled people both from knowledge production about themselves and, by extension, from conversations around ethical standards for participation in research.

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Endnotes

  1. Thank you to Mary, whose resistance to institutional norms deserves much acknowledgement. Thank you to the "Once Upon a Time" writers who, at the time of this research, were affiliated with Community Living Toronto. Thank you to Kathryn Church, Julie McGonegal, Anne MacLennan, and nancy viva davis halifax. And, importantly, my sincere thanks to Ann Fudge Schormans.
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  2. In Canada, where this research took place, people-first language is common and the terms "intellectual disability" and "developmental disability" update past language of "mental retardation" (Odette & Rajan, 2015, p. 31). Such labels can be useful because they may give us a place to start in our thinking about disability. However, my writing follows critiques on language from the field of Critical Disability Studies. In one influential article on this topic, Tanya Titchkosky (2001) suggests that person-first language is apolitical, and that the moniker "people with a disability" deserves critical consideration due to the social organization that undermines this phrase (pp. 129, 137). Person-first language expresses disability as a condition (unlike gender, race, or ethnicity) that is only significant as remedial, managerial, or medical issue that disconnects people from normalcy (p. 137). Such language comes with risks of normalizing tendencies and positions disability as a problem located in an individual, rather than as a phenomenon with particular cultural locations (Snyder & Mitchell, 2006). The effects of this language should concern researchers thinking about intellectual disability, given that people carrying this label have persistently been culturally constructed and classified as "a particular kind of problem to be solved" (Carlson, 2005, pp. 132-135). Following this tradition of classification, people-first ideologies suggests "'people with disabilities' are normal but for their disabilities" which is a problem because expectations of normalcy are disabling (Titchkosky, 2001, p. 137). Therefore, with the understanding that this language is expected to evolve over time, in this writing I resist people-first language by referring to "intellectually disabled people," "labelled people," and "disabled people" in order to draw attention to disability as a socio-political construct participants in my study must forever navigate, rather than disability an inherent characteristic of their personhood.
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  3. This phone number was a rather arbitrary addition to the informed consent form given that most people I was working with did not have access to personal phones or space to make private phone calls. Yet, the REB insisted that I supply a phone number so I complied with this demand and included one on the informed consent form. Nobody ever called that number.
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