Application of the Truth and Reconciliation Model to Meaningfully Engage Deaf Sign Language Users in the Research Process

Abstract

Objectives.

One of the most underrepresented public health populations is the U.S. Deaf community – a minority group of 500,000+ individuals who communicate using American Sign Language. Research on Deaf health outcomes is significantly lacking due to inaccessible research procedures and mistrust of researchers that stems from historical mistreatment of Deaf people (i.e., Audism).

Methods.

Following the Truth and Reconciliation Model, we hosted three Deaf community forums between October and November 2016 across New England. We invited attendees to share their experiences in the research world and make recommendations about how researchers can better include Deaf people in their studies. A select group of hearing researchers served as representatives of the research community and to issue a formal apology on behalf of this community.

Results.

Forum attendees (n = 22; 5% racial/ethnic minority; 59% female) emphasized the following themes: research conducted within general population samples is not an activity in which Deaf people can or will be included; a general mistrust of hearing people, including hearing researchers; researchers’ frequent failure to communicate study results back to the Deaf community or the community-at-large; and a tendency of researchers to directly benefit from data provided by Deaf participants, without making any subsequent efforts to return to the community to give back or provide useful intervention.

Conclusions.

Many injustices and forms of mistreatment are still ongoing; therefore, we recognize that our team’s efforts to foster an open dialogue between the research community and the Deaf community must be an ongoing, iterative practice.

In the United States, one of the most underrepresented public health populations is the Deaf¹ community – a sociolinguistic minority group of at least 500,000 individuals who use American Sign Language (ASL; Mitchell, Young, Bachleda, & Karchmer, 2006). Similar to members of other marginalized groups that experience systemic oppression, preliminary research suggests that Deaf people are at increased risk for adverse physical and behavioral health outcomes compared to the general population (Barnett, Klein, et al., 2011; Barnett, McKee, Smith, & Pearson, 2011). Yet, further findings on Deaf people’s health disparities are significantly lacking due to frequent use of inaccessible research procedures (Livermore, Whalen, Prenovitz, Aggarwal, & Bardos, 2011), as well as a communal sense of mistrust of biomedical researchers that stems from historical mistreatment of Deaf people in both research and medical contexts (Lane, 2005; McKee, Schlehofer, & Thew, 2013). These factors are especially pertinent for members of the Deaf community who experience additional forms of marginalization, including Deaf women; Deaf Black, Indigenous and people of color; Deaf immigrants; and the Deaf Queer Community.

Historical and Modern-Day Research Mistreatment of Deaf People and Culture

Most signing Deaf people do not view themselves as disabled or impaired; rather, they identify as members of a rich culture with shared language, experience, history, art, and literature (Bauman, 2004; Ladd, 2003; Lane, 1992). Conversely, many researchers follow a medical model of deafness, aiming to “cure” or “fix” the problem of hearing loss (Bauman, 2004; Ladd, 2003; Lane, 1992). This medical model is rooted in systemic, pervasive, and widespread oppression of Deaf people (i.e., Audism) that stems from the belief that Deaf people are “lesser than” hearing individuals (Bauman, 2004). Audism has resulted in a system of oppression in which hearing individuals make decisions for and about the Deaf community’s medical choices, language use, education, and access to accommodations. This perpetuates a system of power in which one’s worth is tied to hearing/speaking ability and how well one can assimilate into majority culture (Eckert & Rowley, 2013).

Audism cannot be dismantled only by providing communication access to Deaf individuals, as systemic inequities persist in creating barriers to inclusion. The Deaf community is vulnerable to exploitation by the medical establishment, experiences stigma often associated with disabilities and the “othering” of people who use sign language, and has limited recourse to correct social and economic injustices. Although lack of awareness can be addressed through increased education, true inclusion requires significant systemic change championed by people in positions of power.

This system of oppression underlies a long history of mistreatment of Deaf people in medical, educational, and social settings, particularly the eugenics movement that spanned the late 19^th century through the mid-20^th century. This movement historically included efforts to discourage or prohibit Deaf people from partnering and procreating in order to curtail the transmission of genetic causes of deafness. For example, in order to prevent the intermarriage of Deaf people and the continued growth of the Deaf community, Alexander Graham Bell and his supporters advocated for the closure of Deaf residential schools, the prohibition of sign language, and the firing of teachers for the Deaf (Bell, 1883; Lane, 2005).

The general disapproval surrounding Deaf people’s right to marry and intermarry in the United States eventually evolved to systematic efforts to sterilize Deaf people in order to reduce “social burdens” and increase the health of the human species through “better breeding” (Lane, 2005; McKee et al., 2013). In 1912, Bell’s eugenics section of the Breeders’ Association identified Deaf persons as “unfit” members of the population that should be “eliminated from the human stock” (American Genetic Association, 1912, p. 3, as cited in Lane, 2005). By 1914, sixteen states were enforcing sterilization laws; by 1940, thirty states were active participants in the medical sterilization of Deaf people and other “unfit” populations (Lane, 2005).

The collective memory of these traumas linger and fears about the systematic eradication of the Deaf population remain. Modern-day technologies such as cochlear implants and genetic engineering were designed to “cure the problem of deafness.” For individuals who value their Deaf identity, developing a cure for deafness potentially means bringing an end to their culture and their community (Lane, 2005; McKee et al., 2013). Indeed, physiologist Michael Merzenich, PhD (co-inventor of the cochlear implant) asserted, “The simple fact is that if [Deaf] culture could be reliably wiped out, it would be a good thing to wipe out” (July 1997 issue of the American Psychological Association Monitor; as cited in Ladd, 2003, p. 160). This recent and remote history of harm underlies an overall resistance to public health research efforts - especially research efforts led by hearing researchers.

Access Barriers to Research Involvement

More often than willfully excluding Deaf people, most modern-day public health researchers completely overlook the possibility of including Deaf individuals in the research process. A low incidence population that represents less than one percent of Americans, Deaf ASL users easily go unnoticed when planning research efforts. When noticed, Deaf-focused research can be perceived as a having low public health impact due to the small population size, despite the severity of their health disparities (Korngiebel, Taualii, Forquera, Harris, & Buchwald, 2015). To address this concern, some researchers incorporate Deaf people into a larger subsample of individuals with disabilities; however, a lack of meaningful disability-related variables and the subsequent inability to separate Deaf respondents from respondents with other disabilities renders the data useless to answer key questions relevant to the Deaf community (Livermore et al., 2011). For these reasons, many Deaf people have come to believe that our public health system is largely incompatible to their individual and communal needs.

General population researchers frequently use recruitment, sampling, and data collection procedures that are inaccessible to Deaf sign language users (Livermore et al., 2011). They may rely on random-digit-dial surveys; the use of inappropriately complex written English materials in research protocols; or do not financially plan for ASL interpreters or other accommodations requested by a potential research participant. In the U.S., most Deaf people’s preferred language is ASL. ASL is fully distinct from English – i.e., it is not “English on the hands” – and is a formal language with its own syntax, morphology, and structure (Stokoe, 2005). Given the distinction between languages, ASL fluency does not necessarily imply written English literacy, with the median English reading level of Deaf high school graduates falling at a fourth grade equivalent (Morere, 2011).

Low health literacy, or limited “fund of information,” is also common among Deaf persons due to “a lifetime of limited access to information that is often considered common knowledge among hearing persons” (Barnett, McKee, et al., 2011, p. 1). Contributing to these gaps are the varying quality of Deaf educational institutions, different ideologies surrounding language mode for education, and communication incompatibilities in home environments of the 90 percent of Deaf children with hearing parents (Kushalnagar, Ryan, Smith, & Kushalnagar, 2018; Naseribooriabadi, Sadoughi, & Sheikhtaheri, 2017). Indeed, indirect family communication (e.g., meals, recreation, car rides) is a key source of health-related learning opportunities (Hall, Smith, Sutter, DeWindt, & Dye, 2018). Yet, Deaf children of non-signing hearing parents often miss these learning opportunities due to some level of “language deprivation” in their home environment (Hall, Levin, & Anderson, 2017). As a result, health-related vocabulary among Deaf ASL users parallels non-English-speaking U.S. immigrants.

Enrolling Deaf research participants under the assumption that written English data collection protocols are a sufficient accommodation fails to account for the critical language and literacy considerations outlined above. These considerations especially apply to the process of informed consent and the use of traditional written English informed consent protocols, which has long been identified as an access barrier to Deaf people’s research participation (McKee et al., 2013; Pollard, 1992, 2002; Singleton, Jones, & Hanumantha, 2012, 2014).

The Truth and Reconciliation Model

In recent decades, organizational efforts have attempted to address communal mistrust of researchers though the establishment of truth and reconciliation commissions, largely focused on issuing formal apologies to Black communities around the world: e.g., Tuskegee Syphilis Study, South African apartheid, Greensboro Massacre (Reverby, 2009, p. 221). Building upon these reconciliation efforts, the National Center for Cultural Competence and the Georgetown-Howard Universities Center for Clinical and Translational Science developed the Truth and Reconciliation Model - a research strategy to promote engagement between majority researchers and minority community members via a series of open community forums (Twombley, 2014).

The structure of these forums incorporates the process of reconciliation to begin to address injustices suffered by diverse populations at the hands of our nation’s biomedical research community (Twombley, 2014), and is guided by the following four principles:

1. Truth Telling - authentic open exchange and apology regarding the damage of past research practices.

2. Acknowledging - affirming and learning from the past and embracing new possibilities for future research.

3. Restoring - addressing the problems of the past and ensuring the safe conduct of research based on established policy and practice.

4. Collaborating - acknowledging the power of communities to recognize their own problems and conducting research which values community solutions for community problems.

The Truth and Reconciliation Model has been applied in recent research efforts to improve relationships with a number of underrepresented groups, including local Black and Latino communities (Allison et al., 2015; Nnaji et al., 2018; Twombley, 2014). We chose to implement this model as part of our initial research activities to begin to develop a foundation of trust between our study team and the local Deaf community. As a newly-formed team led by a hearing researcher in an academic medical institution, we felt that we could not pursue any research agenda without first acknowledging Deaf people’s history of mistreatment in research, making a commitment to do better, and authentically inviting Deaf community members to more closely collaborate with our team. To the authors’ knowledge, such a structured reconciliation approach had not yet been applied to engaging members of the U.S. Deaf community.

Research Objectives

Our application of the Truth and Reconciliation Model was the first step of a larger research effort - Deaf ACCESS: Adapting Consent through Community Engagement and State-of-the-art Simulation (NIDCD R21DC015580). The end-goal of this three-phase, formative, community-engaged approach was to develop a prototype intervention to train research personnel to competently and sensitively interact with Deaf research participants during the informed consent process (Anderson et al., 2020). Formative assessment identified barriers and facilitators to Deaf community engagement in research, and this knowledge informed the prototype development of an experiential training intervention for research staff. Throughout this process, the local community served by UMass Medical School participated as an equal partner – the critical factor in the successes of Deaf ACCESS.

Methods

Team Development

Guided by a participatory action research framework (Baum, MacDougall, & Smith, 2006), our first effort was to cultivate a Deaf-engaged team. Deaf people were not merely consulted in an advisory board capacity, but were actively employed as crucial decision-makers involved in selecting research problems, obtaining grant funding, making methodological decisions, disseminating findings back to the Deaf community, and co-authoring publications. This level of engagement produces research that is relevant, engaging, and accessible to Deaf people, and supports a much-needed paradigm shift from Deaf people as research participants to Deaf people as investigators actively engaged in and leading research.

Six of eight team members were Deaf; seven of eight were fluent in ASL. The principal investigator, Melissa Anderson, believed her primary role as a hearing researcher was to oversee the administrative aspects of the research grant and provide consultation on scientific methods. She co-led the team with a Deaf co-investigator, Timothy Riker, a university lecturer of American Sign Language. Their collaboration began during grant writing to align the proposed research activities with Deaf community priorities. This leadership team was supported by another Deaf co-investigator and hearing research coordinator.

The remainder the team was comprised of four Deaf Community Advisors – laypersons from the Deaf community who designed and executed study methodology to match the diverse experiences, perspectives, and needs of the Deaf community. Some had prior experience working in research, while others had none. As such, our team engaged in a form of ongoing cross-training that is typical of community-engaged research teams: “the researchers work with community members to develop a capacity-building strategy in which community members receive training on research theories and methodology; in turn, these members contribute to the project by taking on research activities such as recruitment of participants, interviews, translation, and data analysis” (Wong & Poon, 2010, p. 156). In our case, the principal investigator provided guidance regarding research ethics, procedures for protecting privacy and maintaining confidentiality, study methodology, and study-specific content knowledge. Deaf team members provided linguistic and cultural expertise for development of appropriate study methodology, conduct of analysis and interpretation of data, and dissemination of findings.

Community Forums

Our next goal was to identify modifiable barriers and facilitators to Deaf people’s research engagement. We hosted three community forums between October and November 2016 at Deaf schools and service agencies across New England. The objective of these forums was to open a dialogue between our team and the local Deaf community, as well as to inform later stages of our project (e.g., development of the researcher training intervention; Anderson et al., 2020).

Recruitment and eligibility.

Forum attendees were recruited via postings to Deaf listservs, Deaf Facebook groups, and Deaf-focused organizations. Recruitment materials (i.e., ASL videos and plain-language flyers; Grene, Cleary, & Marcus-Quinn, 2017) were designed by our Deaf Community Advisors (see supplemental materials). Each forum was designated as a “Deaf Space” on recruitment materials (i.e., a space for Deaf attendees only that might create a feeling of safety for sharing experiences and perspectives in a relatively uninhibited manner).

Inclusion criteria were minimal: (1) age 18+; (2) self-identification as a Deaf community member; and (3) willingness and ability to attend a forum at one of three community locations. The only exclusion criterion was inability to provide consent to participate due to guardianship.

Ethics.

Each forum began with an on-site consent process. The principal investigator and co-investigator Timothy Riker presented the information from the study fact sheet in ASL to the audience in large group format. A written copy of the fact sheet was provided to each attendee and they were given time to review the fact sheet and ask any clarifying questions. The forums qualified for a waiver of written documentation of consent.

Procedures.

The principal investigator and co-investigator Timothy Riker collaboratively moderated each forum in ASL. Three hearing ASL interpreters facilitated communication between attendees and hearing researcher representatives (described below). Five Certified Deaf Interpreters provided specialized support to Deaf participants with varying language backgrounds and communication needs. Forum discussion was recorded via five video cameras surrounding the room.

The structure of each forum was guided by the Truth and Reconciliation Model (Twombley, 2014). We invited attendees to share stories about their research experiences and make recommendations about how researchers can better include Deaf people in their studies. In addition to the principal investigator, one or two hearing researchers from UMass Medical School and other academic institutions were present to serve as representatives of the research community and to issue a formal apology on behalf of this community.

Forum discussion prompts were developed with our team’s Deaf Community Advisors: (1) Poll: ‘How many of you have seen ads for research? (in the train/bus, posters, email blasts, etc.)’ [raise hands], Discussion Question: ‘Did you participate? Why or why not? What stopped you?’; (2) Poll: ‘How many of you have participated in a research study before?’ [raise hands], Discussion Question: ‘What did you like about this/these experience(s)? What did you not like?’; (3) Discussion Question: ‘We have these hearing researchers here. What would you tell them to do to improve their work? What ideas/suggestions do you have for them?’; and, (4) Discussion Question: ‘How should researchers determine Deaf community research priorities for their research questions?’

Measures.

At the end of each forum, participants were asked to complete a brief, anonymous written evaluation. Participation in the end-of-session evaluation was strongly encouraged, but voluntary. Questions captured basic demographic information and assessed participants’ views on the impact of the apology, acknowledgement of past injustices, and their likelihood of participating in research or supporting other Deaf people to participate in research. The evaluation was distributed in written format following plain-language principles (Grene et al., 2017), a video was displayed that guided participants through the evaluation in ASL, and interpreter assistance could be requested.

Analyses.

Forum recordings were uploaded into ATLAS.ti, where ASL responses were directly coded in their original form without the need for translation and transcription into written English (Anderson et al., 2018). Qualitative data were analyzed based on a grounded theory approach, in which themes arising from the data were tallied and described. Data were coded collaboratively and simultaneously by all members of the research team, with conflicting points of view further discussed and resolved among the team.

After analyzing data from these three forums, we reached saturation, with no new themes arising. Paired with low attendance issues noted in the Challenges section of the Discussion, our team made a data-informed decision to refrain from hosting additional community forums and instead conduct one additional focus group during the second phase of our study.

Results

Participants

Twenty-two attendees completed the end-of-forum evaluation (13 female, 9 male). Mean age was 55 years. Eighty-six percent of the sample identified as White non-Hispanic/Latino, 5% identified as Asian, and the remainder declined to report their race. Ninety-one percent identified as Deaf, 5% as Hard of Hearing, and 9% as ‘other’ hearing status. Details regarding each community forum are outlined in Table 1.

Table 1.

Community Forum Details

Forum #	Duration	# of Participants	Demographics	Major Qualitative Themes
1	3 hours (with 30 minutes of socialization/ break time)	3	2 female 1 male	“Research is not for me” Mistrust of hearing people Lack of follow-up
			2 White non-Hispanic/Latino 1 Asian
			2 Deaf 1 Oral deaf
2	3 hours (with 30 minutes of socialization/ break time)	10	4 female 6 male	Mistrust of hearing people Lack of “giving back”
			8 White non-Hispanic/Latino 1 White Hispanic/Latino 1 Hispanic/Latino (no race reported)
			8 Deaf 1 Hard of Hearing 1 Other
3	3 hours (with 30 minutes of socialization/ break time)	9	7 female 2 male	Mistrust of hearing people Lack of follow-up Lack of “giving back”
			8 White non-Hispanic/Latino 1 not reported
			9 Deaf

Qualitative Findings - The Truth

Qualitative analyses revealed four major themes, each described below and illustrated through sample quotations. These quotations were translated from ASL into written English by co-investigator Timothy Riker. Parenthetical statements within quotations denote gestures or facial expressions that contained meaningful linguistic content.

“Research is not for me.”

Forum attendees reported their overall belief that research was not an activity in which they could or would be included. They described automatic assumptions that communication accommodations would not be provided - assumptions based on hundreds of encounters in educational, medical, and social settings in which their access rights had been denied. Also fueling these beliefs were study flyers that failed to include information on how a potential participant might request accommodations. Attendees noted their discouragement and lack of motivation to respond to study advertisements, predicting an investment of significant time and effort to advocate for appropriate communication access - efforts that would likely be unsuccessful (“Why bother?”).

“Every time I see a sign that says it’s open to the public, the first thing that comes to mind is that there will be no ASL interpreter available. When I do decide to go, I notice the room is full of hearing people and I’m left out. I do not want to waste my time with the communication barriers.”

- Anne, older adult²

“A researcher told me that if I wanted an interpreter, I would have to pay for it and they would accommodate me. (That’s absurd.)”

- Molly, young adult

“I had to compartmentalize my identity. I could participate in the research if I ‘pass’ as hearing, something I have done many times to fit in with others, or I could have the access I needed and finally be allowed to embrace my Deaf identity. That is a dilemma I often faced.”

- Molly, young adult

Mistrust of hearing people.

Another major theme was a general mistrust of hearing people, including hearing researchers. These fears were rooted in personal and collective histories of oppression and discrimination, many of which were described as forms of trauma, and had resulted in a concerted avoidance of any research conducted by hearing people.

“If any time researchers want Deaf people to participate in their research, it would be ideal if their team partners with Deaf organizations…If they partner with them and Deaf people see that there is a relationship that developed, then maybe they would feel more comfortable participating. I think trust is a big issue for many Deaf people. They’ve been traumatized over and over again.”

- Sally, adult

“I have said this before, but I have had such negative experiences that I have strong feelings against participating in future research studies. The damage has already been done. I think many other Deaf people will say the same thing.”

- Anne, older adult

“I feel like Deaf people are treated like guinea pigs. Why aren’t Deaf people treated the same way as hearing people? The first thing that comes to my mind is the history of eugenics. Don’t exploit Deaf people for your research while holding a different standard for hearing people. (Who do they think I am?)”

- Anne, older adult

Lack of follow-up.

Forum attendees also noted researchers’ frequent failure to practice transparency by communicating study results back to the Deaf community or the community-at-large. They expressed bitter feelings associated with a long history of researchers entering the community to collect data, never to be heard from again.

“For example, remember I mentioned I participated in a research study for left-handed people? They discovered that I am really right-handed, but they didn’t tell me the results of the study. I was not given $100 that was promised after completing the study—I know I have been obsessing about this but there was no explanation about why I couldn’t continue with the study. They shut it down right away and made me feel I failed them.”

- Anne, older adult

“What’s typical, in several research studies I participated in during my college years and after college, is that I did not have a positive experience after completing them because I never knew their findings. It could be 6–8 months, or a couple years, but I always wanted to know the results. It may be that the research study failed or some other reason they did not follow through to share the results with me, but because of that it felt like my participation was pointless.”

- Hannah, adult

Lack of “giving back.”

Forum attendees also noted the tendency of researchers to directly benefit from data provided by Deaf participants, without making any subsequent efforts to return to the community to give back or provide useful intervention.

Audience conversation:

[Jose, adult: “When researchers gather the data then analyze it, it will help increase knowledge.”

Justina, adult: “But will it really help us?”

Jose: “It could help recruit more…

Sarah, adult: “But we can keep trying to…”

Justina: “No, it can’t help! We could keep trying but would struggle for a long time—years before we even know it will help!”

Jose: “Mmm hmm…(nods in agreement)”

Justina: “Well…”

Jose: “Ok, hold on…(glancing at the front of the room)”

Justina: “They have great jobs and can publish their research…but what about the Deaf community. Many of us don’t have jobs!”

Sarah: “I know…”

Jose: “Mmm hmm…do you want…umm…”

Justina: “They are able to get funding and publish the work. But for us it’s ok, thank you, you don’t get much. That’s not right…”

Jose: “You can share…”

Justina: “If I share everything with them, then they benefit by publishing but it doesn’t benefit us at all.”

Jose: “I understand what you’re saying. Maybe you should discuss this with them and make suggestions…”

Sarah: (incoherent/not visible)

Justina: “No, it’s not worth the effort.”]

“There are many things that research can do…research can support employment opportunities, improve education, and support language development. Research findings should help the Deaf community make a stronger case for what our community needs and help us attain employment, better education, communication access and so much more. That’s what research should be about and WILL benefit us IF we collaborate as partners—a mutual exchange between the researchers and the Deaf community that will make positive changes in the community.”

- Adam, adult

Our Team’s Response - The Reconciliation

After listening to these stories and experiences, the principal investigator issued an apology for past wrongdoings and the team made a number of impromptu, but genuine, commitments to attendees. We committed to practicing transparency around our research activities and engaging in ongoing dissemination to the community throughout the course of our studies. We committed to returning to the community at the end of a study to share our final results. We also committed to designing research that would directly benefit members of the community, rather than only benefitting the research team and the academic institution (e.g., providing open access to research-supported materials and products).

Quantitative Findings - The Impact

Three-quarters (77%) of attendees reported that their overall community forum experience was positive (i.e., 4 or 5 on a 5-point Likert scale) - “Hope to see some changes ☺.” Seventy-three percent felt positive about sharing their research experiences - “Excellent, glad it happened!!” Eighty-six percent enjoyed the opportunity to directly advise researchers about how to improve their work. Yet, only 59% reported that they appreciated the apology from hearing researchers - four attendees reported feeling neither positive nor negative about the apology and two attendees felt negatively about this part of the forum.

Discussion

Opportunities

In 2016, we hosted three community forums guided by the Truth and Reconciliation Model to open lines of communication and begin to build trust between our research team and the local Deaf community. Attendees reported that they valued the opportunity to provide guidance and directly advise hearing researchers. Relying on the expertise of communities to guide research agendas and research methods within their own population is the core component of participatory action research (Leung, Yen, & Minkler, 2004). Yet, Deaf people are rarely asked to share their expertise in these areas (McKee et al., 2013; Singleton et al., 2014). Deaf people are accustomed to paternalism at the hands of well-meaning hearing parents, educators, medical professionals, policy-makers, and politicians who make decisions on their behalf (Bauman, 2004; Gournaris & Aubrecht, 2013; Lane, 1992). The implicit message embedded in this dynamic is that “hearing knows best,” a popular phrase among Deaf people that has become a satirical commentary on Deaf-hearing cross-cultural interactions (Burch, 1997; Robinson, 2018). By asking Deaf community members how we should conduct our research, we a first step towards reversing the typical power dynamic between hearing researchers and Deaf people.

Challenges

Attendance.

During the planning stage, our team envisioned 25 to 50 community members attending each event - our actual attendance of 22 individuals across three forums fell far short of that vision. A number of factors likely led to low attendance. First, some of our team members were not yet well-known in the Deaf community. Perhaps community members were reluctant to attend the forums because they did not know whether we could be trusted. Among individuals who did attend the forums, some were uncomfortable sharing in such a public space and expressed that they would have preferred to discuss these issues in a smaller, more intimate setting. This mistrust and fear of public exposure likely led others to avoid the forums altogether.

In hindsight, this issue may have been partially addressed if our hiring strategy for Deaf Community Advisors had more highly prioritized onboarding “grassroots” Deaf leaders, as well as leaders from other intersectional groups within the local Deaf community (e.g., the Deaf Latino community, the Deaf Queer community, the DeafBlind community). In this case, our team would have been comprised of a larger number of trusted in-group members to vouch for the team and encourage the attendance of Deaf people who experience multiple forms of marginalization at the community forums. Such representation could have also been increased with recruitment materials in languages other than ASL and written English (e.g., Dominican Sign Language, Haitian Sign Language, visual-gestural communication, written Spanish).

Second, Deaf community members who saw our advertisements may have made similar assumptions expressed by forum attendees - “research is not for me.” Perhaps they felt that the topic was not applicable to them, or perhaps they didn’t possess a clear understanding of what was meant by “research.” To illustrate this point, a few forum participants were highly motivated to express their opinions, but primarily described frustrations with the healthcare system and were unable to shift their commentary to the research enterprise. Future recruitment videos should, therefore, include concrete examples of what is meant by “research” and testimonials from Deaf community members about their research experiences.

Third, we believed that hosting forums in Deaf community spaces would draw more attendees and increase comfort levels compared to an academic setting. While this may be true, we may have failed to consider the complicated histories associated with some organizations when selecting our forum sites (e.g., schools with a history of prohibiting sign language use, agencies that have only more recently adopted person-centered approaches). Future efforts may benefit from a more neutral location to encourage attendance and participation.

Fourth, the forum format may simply not be the best fit for the Deaf community. The Truth and Reconciliation Model was developed and piloted in Washington, DC for use with members of racially and ethnically diverse communities (Twombley, 2014). It was not developed for Deaf signing people and did not take into account Deaf people’s unique culture and social norms. Our forum attendees’ stated preference for a smaller, more intimate setting is an important piece of guidance for how the Truth and Reconciliation Model should be adapted for the Deaf community in future efforts.

Lastly, from a logistical standpoint, transportation or childcare barriers could have impacted attendance. Future efforts should include funds to address these barriers.

The apology.

Only half of attendees reporting feeling positive about the apology from hearing researchers. Available literature on organizational apologies offers some key considerations that may explain why our attempt at apology fell flat.

First and foremost is the person who offers the apology. Although we had a member of the majority oppressor group issue the apology (Reverby, 2009), this individual should be in a higher position of power than our principal investigator: “the more serious and the more core the violation, the more necessary it becomes that a senior leader - up to and including the CEO - make the apology” (Schweitzer, Brooks, & Galinsky, 2015). For future reconciliation efforts, an apology from a representative of an institution that has been notoriously been involved in past harms might be feasible and more impactful.

A second factor to consider is the timing of the apology. Organizational apologies should be issued quickly after it is learned that an error, infraction, or injustice has occurred (Schweitzer et al., 2015). Our attempts at apology in 2016 were likely “too little, too late” for the 100+ years of research mistreatment experienced by members of the Deaf community. Also complicating the timing factor is the fact that many of the injustices that our community forum attendees described are still ongoing within our broader institution and in institutions across the country - overlooking the inclusion of Deaf people in research, denying requests for ASL interpreters, and continuing to focus the majority of research efforts on “solving the problem of deafness.”

A third factor is the sincerity of the apology. Many organizational apologies fail due to insincerity, fraudulence, or disingenuineness: “In assessing whether or not to apologize, organizational leaders must also focus on the extent to which they are willing - and able - to change the company’s behavior. If they can’t or don’t want to do things differently in the future, the case for making an apology is weak, because it will sound hollow and unconvincing” (Schweitzer et al., 2015). By the time our team issued our apology, Deaf community members had likely experienced a number of empty apologies and false promises from hearing researchers.

In other words, our apology initially meant nothing, nor should it have; rather, whether we would follow through with our commitments to do better would determine potential for future reconciliation. As time progressed and our team made ongoing, concerted efforts to practice transparency, share research results, and give back to the community, a new level of trust and openness began to build. These efforts included ongoing dissemination on Facebook about the status of our research studies and preliminary results as they became available; hosting a movie premiere event as an expression of our gratitude and an opportunity to show the community the final end-product of our work; and, making our researcher training video freely available to anyone who might benefit via the National Institutes of Health website.

Future Directions

Despite gains in trust that our research team has observed, it appears to have extended only to our team and not to our academic institution or researchers at large. In truth, our team was attempting to take on a much greater endeavor than was really feasible within the scope of this project - specifically, apologizing on behalf of all hearing researchers past and present. Our approach may have been far more effective if it were localized to specific research projects and the participants of these particular projects. Future efforts should, therefore, emphasize collaborations with Deaf-focused research teams across the country, replicating the application of the Truth and Reconciliation Model in their regions and brokering relationship repairs between their local Deaf communities, academic institutions, and local organizations and foundations that sponsor research. The Deaf community has likely suffered the most harm from academic institutions and research teams working to cure deafness. Hosting reconciliation processes with these researchers in particular would likely have a high level of impact - both for Deaf community members and for the research community.

Moreover, many injustices and forms of mistreatment are still ongoing. Within this context, we recognize that our team’s efforts to foster an open dialogue between the research community and the Deaf community must be an ongoing, iterative practice. This iterative process might involve hosting series of regional focus groups in three-to-five-year intervals - checking in with members of the Deaf community about what we have been doing well and asking for feedback about what can continue to be improved upon in the coming years. An authentic process of truth and reconciliation is a lifelong dedication to asking the right questions, listening to the answers, committing to do better, and following through on commitments. As noted by our forum attendees, an apology only holds significance if it leads to meaningful social change across individuals, institutions, and systems.

Public Significance Statement:

Deaf sign language users are often hesitant to participate in public health studies due to mistrust of researchers. The Truth and Reconciliation Model has been used to improve relationships between researchers and members of sociolinguistic minority groups. We used this model as part of our initial research activities to begin to develop trust between our research team and the local Deaf community.