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Abstract

The late Black feminist scholar, bell hooks, suggested that the margin can be a place of radical possibility, where marginalized people nourish their capacity for collective resistance. On the margin, it is possible to generate a counter-language. In this paper, we chronicle, describe and reflect upon how bell hooks' ideas inspired the creation of a national 2-day conference titled, ‘Listening to the Margins’. This conference was focused on understanding the intersectional experiences of childhood disability and race with a view to better supporting racialized disabled children, youth, and their families. This conference was needed because intersectional experiences of childhood disability and race have been silenced in childhood disability studies, critical race studies, and various other resistance-oriented systems of thought. Racialized children with disabilities and their families are often unsupported as they navigate Euro-centric healthcare systems. Reflecting on lessons learned from our conference, we suggest several strategies for advancing meaningful research programs with racialized disabled children. Strategies include centering the art of listening, amplifying the margin, engaging the arts to promote empathy, embracing psychosocial support in work on ableism and racism, developing clinical tools and practices that are grounded in lived patient experiences, and advancing decolonizing research that recognizes the role research has historically played in perpetuating colonial violence. In totality, this article unpacks how sitting on the margins, as bell hooks suggested, has allowed us to occupy a place of discomfort and creativity necessary to disrupt dominant discourses. In so doing, we have made space for the hidden narratives of racialized disabled children and their families.

Keywords

race disability childhood decolonizing research arts-based research

Introduction: The Genesis of the Listening to the Margins Conference

In July 2020, in the middle of the first wave of the COVID-19 pandemic in North America, George Floyd was murdered at the hands of Minneapolis police officer, Derek Chauvin. Floyd’s murder was captured on a cell phone camera by a youth and broadcasted for the world to see. The USA has a disturbing centuries-long history of police violence against Black men, including lynching (Dreyer et al., 2020). Floyd’s murder reinvigorated the well-known Black Lives Matter (BLM) movement. This movement, initiated in 2012 in response to Trayvon Martin being murdered by George Zimmerman, had made its mark on American culture long before Floyd’s murder (Chase, 2018). Here in Canada, 2 days after Floyd’s murder, Regis Korchinski-Paquet, an Afro-Indigenous young woman from Toronto, was also part of a police-involved death that resulted in a rigourous investigation. Additionally, the murder of Andrew Loku in Canada followed shortly thereafter. It is evident that black lives continue to face unjust risks of injury and death at the hands of both the Canadian and American states. Nevertheless, in our observation and reflection, in Canada, the public murder of George Floyd served to reinvigorate the Black Lives Matter movement. More importantly, Floyd’s murder served as an impetus for organizations and institutions to examine their roles in the continued perpetuation of White supremacy and associated systems of privilege. While Floyd’s murder ushered in a heightened focus on social justice-oriented work, we, as authors, are also deeply aware of how problematic it is to look at the American political landscape as a moral authority on what is right and wrong. Indeed, Canada also has systemic problems with anti-black racism and violence that must be named, known, and seen. The ruse of the discourses of tolerance and multiculturalism in Canada has served to obscure Canada’s problem with anti-black racism and state-sanctioned violence (Maynard, 2017).

In the emotional wake of Floyd’s murder, a large children’s hospital in Canada struck up a number of social justice-oriented committees and working groups in the areas of program and services, patient and family health and well-being, and research. The goal of these groups is to advance greater inclusion and equity within its institutional spaces, programs, and services; to improve the health and well-being of patients and families experiencing marginalization; and to create research processes that center the values of equity, diversity, and inclusion (EDI). Advancing greater emphasis on EDI in research through numerous working group sessions prompted us to dive into questions about EDI in our own area of research: childhood disability. We turned to the literature in an effort to better understand the degree to which scholars have engaged childhood disability in relation to race and racism. Most of us are racialized researchers, patient and family experts, and/or clinicians. Our team members have lived experiences of apartheid, forced immigration, and refugee journeys, as well as more common experiences of racism (e.g., micro-aggressions, institutional/government processes that discount experiences of race). For years, we have had a general sense and feeling that perhaps racialized patients and their families are facing an unjust number of barriers that hinder their healthcare access. The literature confirmed this and, in an alarming way, drew our attention to the remarkable lack of research on childhood disability and race.

What the Evidence Said

Upon reviewing the literature, several interesting observations were made. Canada is home to approximately one million racialized disabled people over the age of 15 (Statistics Canada, 2018). However, there is currently no statistical and epidemiological data that captures the number of racialized disabled children living in Canada under the age of 15 years. There is a similar parallel lack of data on Indigenous disabled children under 15 years of age. This lack of statistical data on childhood disability and race/Indigeneity is deeply troubling given that we know racism is associated with poorer mental (e.g., anxiety, depression) and general health, psychological stress, and physical health (e.g., overweight-related outcomes) (Paradies et al., 2015). Despite the lack of statistical data, we identified a number of alarming issues at the intersection of childhood disability and race.

Racism presents itself and shapes our lives through what we view as a cumulative constellation of adverse effects. By this, we mean that racism can (and does) cause detriment to child health outcomes through a series of cumulative adverse events, such as trauma, chronic stress, violence, oppression, and witnessing racism directed at parents and siblings (Carter, 2007; National Collaborating Center for Determinants of Health, 2018; Paradies et al., 2013; Stafford et al., 2011). The adverse impact of observing parent-or sibling-directed racism from strangers has been termed ‘vicarious racism’ (Heard-Garris et al., 2018). Understanding racism as arising from numerous events connected through lived experience, and acknowledging the cumulative effects of such events, helps us to gain insight into racism’s more insidious and covert effects.

By experiencing the intersection of childhood disability and race, racialized children with disabilities face alarming inequities. In comparison to White disabled children, racialized children with disabilities face longer delays in accessing services (Mandell et al., 2002; Nowell et al., 2015), are diagnosed at a later stage (Mandell et al., 2002), and are provided with fewer treatment options (Cauce, Domenech-Rodriguez, Paradise, Cochran, Shea, Srebnik et al., 2002; Danseco, 1997; Mandell et al., 2002). Discrepancies such as critical delays in diagnoses are thought to contribute significantly to worsened prognoses (Diamond & Jacobs, 2010). In Canada and the USA, racialized children with disabilities also face greater prevalence and severity of disability in comparison to White children (Bai et al., 2007; Watt & Martinez-Ramos, 2009). Identifiable risk factors for various disabilities, including poverty, are disproportionately experienced by racialized children (Alegria et al., 2010). Racialized children with disabilities and their families have poor experiences when accessing health services because they are subject to various forms of racism and stereotyping within healthcare spaces (Jennings, Khanlou & Su, 2014; Rounds et al., 1994). Interactions of this type ultimately lead to feelings of mistrust (Burkett et al., 2015, Mir & Tovey, 2003). Racialized children and youth with disabilities rarely ever receive racially and culturally sensitive care (Lindsay et al., 2012), causing workers in children's health spaces to call for training in culturally and racially competant care. These children and their families also face significant language barriers (King et al., 2011). Shame and secrecy tend to characterize experiences of childhood disability in racialized communities (Lovelace et al., 2018). Additionally, racialized children are rarely, if ever, meaningfully included as active agents in their care experiences, especially in comparison to White children. For example, paediatricians are more likely to pose questions to White children than they are to Black and Hispanic children (Stivers & Majid, 2007; Shah, 1997). Some studies have revealed that the field of childhood disability and race could greatly benefit from the use of an intersectional lens that considers the dual oppressions of disability and race (Flynn, 2020; Priestley, 1998).

This research has drawn attention to the additive barriers that racialized disabled children and youth may face in the health care system. However, the literature is marked by glaring absences. Racialized disabled child and youth voices are largely absent in the literature, especially those derived through the qualitative paradigm. Researchers have not utilized decolonizing approaches in their research. Researchers often do not consider how research has been used in the service of colonization, nor the ways in which participants may be re-traumatized through research. The literature has also focused heavily on a select few childhood chronic illnesses (e.g., asthma, autism, and obesity). Most notably, there is no national network of stakeholders in Canada dedicated to the pursuit of qualitative inquiry at the intersection between childhood disability and race. These glaring lacunae were the impetus for the ‘Listening to the Margins’ conference.

Conference Overview

With attention to gaps in the evidence, we designed and implemented a 2-day national conference on childhood disability and race. Although our original intent was to conduct an in-person or hybrid conference, the rapid rise of the omicron COVID-19 variant in December 2021 and January 2022 necessitated a fully virtual conference. The conference’s core themes were: Day 1: Welcoming Remarks; Lived Experience – Autistic While Black: Our Family Journey; Lived Experience – Finding my Identity; Keynote 1 – How Racism Gets Under my Skin: The Impact of Racism on Child Health; Art Gallery Video; Keynote 2: Colonialism, Health and Indigenous Children; Musical Guitar Performance; Closing Remarks and Psychosocial Support and Resources.

Day 2: Welcoming Remarks. Lived Experience - Differently DisAbled: A Brother’s Perspective and a Musical Performance; Interactive Session – Noticing Silences in Research and Building Clinical Tools; Keynote- Exploring the Marginality of Black Mothering Experiences – Institutional Navigation; Keynote 4 – What Does it Mean to Listen?; Solo Dance Performance; Closing Remarks and Psychosocial Support.

Critical Race Theory, Disability Studies, Post-Colonial Theory, and Intersectional Theory all emphasize the importance of prioritizing lived experience narratives over “expert accounts” (Blessett & Gaynor, 2021). Indeed, it is thought that those that embody these intersectional nexuses are better able to speak directly to experiences of race and disability. In addition to the theoretically inspired theme of lived experience, we also developed themes based on gaps in the evidence. For example, the Noticing Silences theme on the second day was driven by evidence suggesting that the intersectional nexus between race and disability is glaringly absent. It was therefore important to incorporate a theme that acknowledged and questioned these silences and their meanings. The theme of Indigenous Childhood Disability was driven by the need to not to conflate histories of oppression between Indigenous people and racialized people. Although often neglected in the evidence, it is well known that Indigenous people face nuanced and particular oppressions and ascribe unique meanings to disability that differ from Euro-Centric understandings (Velarde, 2018). The theme “What Does it Mean to Listen?”, led by Drs. Carl James and Tim Ross, was driven by both evidence and theory concerning the social construction of race and disability. This more challenging, philosophical theme was developed to speak to the ways in which power relationships in contemporary society come to shape what bodies get labelled as raced and disabled in the first place. This theme allowed audience members to engage and question complex issues, such as identity politics, normative ordering, and social constructionism (Frederick & Shifrer, 2019). Another theme dealt specifically with Black Mothering and Childhood Disability. This theme was critical to understanding the unique and particular experiences of Black and Disabled People that should not be conflated with racialized people. Further, it let audience members engage with Black Feminism/Mothering Theory (Bailey & Mobley, 2019) and the ways in which these theories may enhance our ethic of care in childhood disability. Led by Black scholar Dr. Janelle Brady, we learned how Black mothers often do not draw on medicalized deficit discourses to understand their children. We also included three art-infused themes based on evidence that the arts can help to promote emotional resonance and empathy (Hurley et al., 2014), while also enhancing healthcare experiences (Camic, 2008). Due to the emotionally charged nature of the conference (and to prevent attendees from experiencing ‘Zoom fatigue’) we were not able to cover the many other important themes associated with experiences of race and childhood disability. However, we encourage future event organizers to look to both evidence and theory to identify and map out their themes given that it proved highly beneficial in the case of this conference.

We began both days of the conference by listening to lived experiences of “patient” experts and family members. These patient and family experts spoke about the personal impact of living at the intersectional interface between childhood disability and race. Intersectionality, or consideration of the confluence of multiple axes of oppression, was a term originally coined by Black feminist, Kimberlee Crenshaw (Cho et al., 2013). Each lived experience storytelling exercise was followed by keynote presentations by “professional experts”. Keynote topics addressed the impact of racism on child health outcomes, Black families’ experiences of disability and hospitalization, the unique healthcare issues impacting Indigenous disabled children and families, and the social construction of race and disability. These keynote sessions provided racialized professors and clinicians with an opportunity to share their research and clinical platforms on childhood disability and race. We also included a session called “Noticing Silence in Research and Building Clinical Tools.” This session explored how research has been used to serve the interests of colonizers and the need for a decolonizing research agenda. This interactive session, which we discuss further below, was used to identify critical missing research questions and qualitative studies at the intersection of childhood disability and race. Each day, psychosocial support and the arts (e.g., dance, musical performance, and visual arts) were woven into the program. The conference finished with a dance performance by a racialized dance troupe.

Language, Identities, and Theoretical Definitions

We recognize that language is contentious. In this paper and at our conference, we adopt the term “racialized” as per the Ontario Human Rights Commission (n.d.). This is the preferred term over “visible minority,” as the term racialized is used to denote the role of power and power relationships in the process of labeling particular bodies as raced. Furthermore, when racialization is viewed as a social process, it also de-emphasizes biological notions of race. Theoretically, terms such as ‘racialize’ and ‘structural racism’ have been informed by critical race theory (CRT). CRT acknowledges the pervasiveness and permanency of racism and suggests that structural racism must be challenged (Vaught & Castagno, 2008). Because racism bleeds into all of the structural institutions within which we carry out our social lives, it cannot be seen as an individual or biological pathology or weakness (Vaught & Castagno, 2008).

We recognize that the term ‘racialized’ may flatten or erase the unique experiences of Black and Indigenous people who often experience more virulent forms of racism and violence than people of colour alone. For example, both Black and Indigenous people face disproportionate amounts of police violence and child apprehension (Samuels-Wortley, 2021). Black people must also contend with the violent legacy of the Trans-Atlantic slave trade. It is critical to note the unique spectrum of experiences and severity of intersectional oppression that disabled children encounter depending on their membership to Black, Indigenous and/or people of colour communities. The authors recognize this diversity and spectrum of experience when we use the term “racialized”. We also recognize that the experiences of racialized disabled children are further differentiated by class and socio-economic status, immigration, sex and gender, sexual orientation, geography, and myriad other factors.

Additionally, although many human rights organizations use person-first disability language (i.e., stating ‘person with a disability’), we opted for identity-first disability language (i.e., ‘disabled person’). Many critical scholars prefer identity-first language because they view disability as integral to identity and thus think it should not be relegated to secondary status; moreover, they suggest that person-first language perpetuates stigma (Dunn & Andrews, 2015). Beyond this, some scholars have suggested that person-first language organizes and perpetuates a biomedical understanding of disability that prevents alternative ways of thinking about and questioning disability experiences (Ross, 2013; Titchkosky, 2001). In thinking about disability at our conference, we also recognized lived and structural ableism. Ableism refers to oppression enacted against disabled people based on physical, sensory, cognitive, or psychiatric abilities. Our understanding of ableism has been informed by both CRT and critical disability studies (CDS). Informed by CRT, other critical theories, intersectionality, and gender and women studies, a CDS perspective seeks to enhance awareness of the systemic nature of ableism in contemporary society. In so doing, CDS troubles taken-for-granted ideological assumptions about what bodies are and how they move in time and space. It recognizes the pervasive and insidious nature of ableism that remains invisible to (and thus unquestioned by) many able-bodied people (Trybus et al., 2019). When thinking through definitional issues, organizers of future conference on race and disability (or, other aspects of social difference) may wish to draw upon CRT and CDS perspectives. Both perspectives are helpful in that their approaches toward definitions emphasize the power relationships and active social processes involved in how we come to understand what bodies get labelled as non-normative. In this way, both theories avoid individualist-biological notions of race and disability that discount the social/power relations that are always shaping knowledge about and experiences of race and disability (Vaught & Castagno, 2008).

At our conference, we also included sessions on both racialized disabled children and youth, and Indigenous disabled children and youth due to the needs of our conference attendees. This decision was not made lightly. “Indigenous” is the collective name used to describe the first people of Canada. While dwindling in popularity, the term Aboriginal may also be used (Government of Canada, 2021). There are similarities in experiences between racialized and Indigenous young people, such as experiences of racism and discrimination. For example, both Indigenous disabled children and Black children and youth are over-represented in Canada’s child welfare system in Canada (Caldwell & Sinha, 2020; Cénat, 2020). Black and Indigenous children are also both over-represented in child protection systems. While there are similarities across these groups’ experiences, we realize that they have vastly different histories of oppression and trauma. For instance, in Canada, Indigenous disabled children face an ancestral trauma history that involved the forced removal of Indigenous children by White people into residential schools that stripped them of their language, heritage, and dignity. Many of these children died in the residential school system because of disease, abuse, and neglect (Wilk, Maltby, & Cooke, 2017a, 2017b). Indigenous people in Canada also endured the Sixties Scoop; i.e., the mass removal of Indigenous children from their families into the welfare system without the consent of their families or their Indigenous communities. Conditions on reserves, like poor water quality and food scarcity, may not meet the healthcare needs of disabled children. In contrast, many racialized children have an ancestral history of immigration trauma (Perez-Foster, 2001) or fleeing home countries as refugees. Many of these families face racism because of language barriers and other markers of difference. In this way, while we recognize the similarities between racialized and Indigenous children, we by no means wish to conflate their very different trauma histories in colonial White society. Below, we discuss and reflect upon lessons learned from the conference with the aim of generating principles that may help guide future researchers in their work with racialized disabled children/youth and their families.

Centering Listening

In this quote below, Kleinman (1988) is emphasizing and calling for greater attention to the importance of listening – and of attentively hearing the Other in the context of what sociology of illness scholars call deep listening. “Perhaps the healer and the family, like the historian of human misery, must allow themselves to hear …. the wail” (Kleinman, 1988, 284). Throughout our conference, we aimed to center the work of listening. While this may seem like a straightforward and simple action, it is not so easily done within academic and hospital settings that have operations that align with corporate capitalist logic and emphasize the attainment of instrumental learning outcomes. In these settings, the work of listening has arguably been negated. In this way, traditional academic learning spaces rarely make space for the transformative work that may occur in a space where radical listening with the Other occurs. Social justice scholars suggest that listening is integral to advancing decolonizing, anti-racist, and anti-ableist work because it is only through attentively hearing the Other that we can know more of their experience (Tobin, 2009). For instance, Kincheloe (2008) and Tobin (2009) have coined the term “radical listening”. When we radically listen, we can comprehend the Other in terms of their standpoints and their axiological commitments (Tobin, 2009). Radical listening also involves viewing difference as a resource, merit, and asset. The goal of radical listening is not to produce an outcome; rather, its aim is to gain awareness of the diversity of our differences (Alexakos & Pierwola, 2013). Because it entails subduing the ego and placing the Other before the self, listening work is a deeply humbling exercise that poses great interpersonal challenges and constraints. Indeed, it is incredibly challenging to listen to the Other without projecting our stories, ideas, and identities into the speaking space (Alexakos & Pierwola, 2013; Tobin, 2009). Deep listening can produce a great deal of discomfort and unease, as the Other’s often painful experience is opened to the listener. Radical listening is not utopian by any means. Rather, it can invite discord, contradiction, pain, and dissonance. However, the work of radical listening can eventually create more inclusive spaces for sharing and learning – a space where those with marginalized identities feel more seen and heard (Alexakos & Pierwola, 2013). We suggest that future decolonizing researchers aiming to work in the space of disability and race employ the art of radical listening.

Centering the Margin

In her book, Out of the Sun: On Race and Storytelling, Massey Hall lecturer and black writer Esi Edugyan (2021) asks “…why do we sideline some stories and mythologize others? Who are the living, breathing people who have remained beyond our sight, occupying a place in the shadows?” In our conference, we tried to pay attention to stories in the shadows that have gone unnoticed – stories that have never been mythologized. We endeavoured to center the margin and to intentionally de-center Whiteness from childhood disability research and care. In so doing, we were inspired by the late Black feminist bell hooks’ notion of the margin. Drawing on hooks’ work, Joseph Walker (1999) suggests that notions of the margin and marginalized people carry powerful negative connotations. In this way, we often think of the margin as a place of oppression and even despair. For instance, many of the families that we work with in children’s hospitals can be considered as members of marginalized groups. The margin encompasses the stories, bodies, and lives that go unrecognized and unseen. However, bell hooks has also suggested that the margin is more than a place of pain and despair. For hooks, the margin can be a place that catalyzes resistance, creativity, chaos, and change. Indeed, from the margin, marginalized people can build resistance and the capacity to say no to racism, ableism, and oppression. The margin can also be a place where powerful counter-discourses are generated. These counter-discourses are needed to speak back to dominant discourses of ableism and racism. In thinking about the margin in radically alternative ways, hooks has helped us to name the margin as a place of possibility and transformation. We encourage readers here to engage with hooks’ seminal 1989 text, Choosing the Margin as a Space of Radical Openness.

Thus, in our conference, we purposefully sought to center the margin by inviting lived patient experience experts (i.e., those who embody the lived experience of race, disability, and illness) to share their stories. Their stories of racism and ableism in healthcare spaces are not ones that have typically been centered or heard. We also sought to amplify the voices of racialized and Indigenous scholars and experts with the aim of elevating their research programs in childhood disability research and care. Hooks’ centering of the margin and her notion that it is an important place of possibility helped us to amplify and elevate lives, bodies, and stories on the margin (Walker, 1999). We encourage future decolonizing researchers to intentionally de-center Whiteness and amplify the margin.

Using the Arts to Explore Racism and Ableism

Several centuries ago, in European countries at least, the arts and sciences enjoyed relatively equal levels of prestige (Van Der Wende, 2011). However, with the rise of scientism and positivism, the arts have been marginalized in academic disciplines for the past 150 years. Although calls have been made to address the marginal status of the arts in comparison to the sciences, the arts continue to suffer from budget cuts and remain a fringe discipline. In Listening to the Margins, we intentionally wove the arts and arts engagement through our conference program. We decided to include the arts intentionally given the long history of evidence supporting the use of the arts to foster emotional resonance and empathy with difficult subject matter (Hurley et al., 2014). Our intentional usage of the arts at the conference was borne out of a desire to deepen audience members’ engagement with emotions, embodiment, collective resistance, and relationality. A critical approach to the arts and arts-based research insists that we have a responsibility to listen to subaltern voices and their entangled histories, and to be aware of culturally hegemonic and dominant narratives (Keifer-Boyd, 2011, 3). In an academic context that has historically valued the cognitive over the embodied, the arts can invite visceral, corporeal, and multi-sensory (Keifer-Boyd, 2011) ways of knowing that can move audience members at a bodily level. When we are trying to encourage audience members to engage with difficult lived experiences, such as racism and ableism, and to hear subaltern voices that have lacked access to dominant power structures, the potential for the arts to engage people on a bodily and sensory level is truly innovative. Given the deeply affective and emotional nature of the content at our conference, especially stories of exclusion and loss shared by lived patient experience experts, we felt that including the arts may aid attendees in generating emotional resonance, empathy, and understanding (Hurley et al., 2014). We encourage future decolonizing researchers to engage the arts intentionally and mindfully to enhance empathy and resonance with the Other.

The conference’s art segments (i.e., one musical performance and three dance performances) tapped into core thematic issues, such as inclusion and belonging, fear, ostracization, and marginalization. For example, our musical performer, Sol, performed a classical guitar piece at the conference. The song was about the act of “begging”. For Sol, reflecting on his own lived experience of disability and geographic diaspora across continents, disability can often feel like a desperate attempt to “knock on closed doors” in society. Similarly, several of our dance performers from Co-Lab used dance as an opportunity to reflect upon concepts of difference, exclusion, immigration, identity, and racism (See video 1 in supplementary material).

In June 2023, when we launch best practice recommendations for culturally safe and anti-racist pediatric care that have emerged through this conference and other research, we will also host a Listening to the Margins art exhibition (see image) in Toronto, Canada. This art exhibition will give Toronto community members an opportunity to engage with the conference’s core concepts and to learn through the arts about the intersectionality of disability and race. Of note, our conference promoted art engagement and art dissemination. Due to the short duration of the SSHRC connection funding program and its non-research foci, we did not conduct any arts-based research. However, when engaging in difficult conversations about race and disability, we strongly recommend that future conference organizers engage the arts, arts dissemination, and arts-based research as a way to enhance emotional resonance and empathy.

Decolonizing Childhood Disability Research

We conducted an interactive knowledge-and tool-building session called “Noticing Silences in Research and Building Clinical Tools”. To do this, we drew upon the seminal decolonizing scholarship of many intellectuals and activists with recognition that black philosopher and psychoanalyst Frantz Fanon should be rightfully credited with the development of this field. For instance, we drew on Fanon (2018), Dei & Jajj, 2018; Simpson, 2017; Smith, 2021; Tuck & Yang, 2011; Wa Thiong’o, 1992; Wilson et al., 2019, and Dauda & Falola (2021) insights on decolonization to inform this section of our conference.

It has been suggested that “… [s]cientific research is implicated in the worst excess of colonialism. … Research is not an innocent or distant academic exercise” (Bhattacharya, 2009, 108). We started the session by acknowledging the role that research has historically played in the perpetuation of colonial violence. For example, in Canada, Western researchers caused great harm to Indigenous people, making it extremely difficult to build trusting and caring relationships between Indigenous individuals/communities and the research community (Datta, 2018). At the conference, we tried to establish the importance of a new decolonizing research agenda with racialized and Indigenous disabled children and youth and their families. Such a decolonizing research agenda must clearly acknowledge harms of the past and establish a strong commitment to building trust and transparency. Further, decolonizing research with Indigenous families must also involve a centering of land-based knowledge, Indigenous epistemologies and values, as well as a recognition of Indigenous sovereignty (Datta, 2018). As we generated discussion about research questions that have not been asked at the intersection of race and childhood disability, we also tried to be critical of the role that silence plays. Indeed, silence should not always be equated with oppression and can also be an indicator of an individual’s resistance. Silence can also be intentional, marking a place of marginalization and of not belonging (Bhattacharya, 2009). For future childhood race and disability scholars, we suggest that it is critical to recognize how research has been used to harm people of colour and to commit fully to the principles of decolonizing approaches.

Collapsing the Boundary Between Care and Practice

Historically, the academy has not been a place that has welcomed and embraced the emotional and the affective domains. Indeed, emotions in the academy have been ignored, given the excessive focus on scholarly production. Recently, social and cultural geographers have been considering how emotions, such as anxiety, help constitute the neoliberal ethos in the academy (Askins & Blazek, 2017). It has been recognized that emotions in the academy do matter and are necessary to challenging notions of disembodied thought (Ahmed, 2004; Cvetkovich, 2012). Rather, in academic spaces, it may be possible to cultivate a more embodied-thinking that does not separate the mind and body. In so doing, we critique the notion that academia is an emotion-free space and we seek to make space for the affective within the context of research (Askins & Blazek, 2017). In particular, we apply this critique and aim to the development of deeply emotional research work at the intersection of race and disability. As well, oftentimes, clinical care and research are relegated to separate spheres.

Given the emotionally laden nature of research on ableism and racism, at our conference, we sought to collapse artificial boundaries between clinical care and research. That is, we sought to make space for emotional and affective responses to our race and disability work. Arguably, creating room for emotional reactions within the context of listening to marginalized voices is critical to the cultivation of empathy and resonance. At the conference, we enlisted two psychotherapists-in-training to provide psychosocial support onsite. Given the importance of anti-racist (Cénat, 2020) and decolonizing therapies, we enlisted the services of therapists who possess a wealth of training in anti-racism. Both therapists are racialized people. We also recognize that racialized therapists have fewer professional opportunities and often work in a broader culture of Whiteness (Beagan et al., 2022). One has helped to guide therapy for parents that have lost children to gun violence and has facilitated anti-racism support groups for therapists-in-training. The other has led a national study on racial trauma and racial healing for racialized psychotherapy patients and racialized psychotherapists. Of note, the therapists did not provide therapy – rather, they provided listening, space, time, and ground, or a safe “container” for the emotional work of race and disability in the form of psychosocial support. One of the therapists was a constant presence at the conference and attended every session. He was there to help hold space and care for any emotional wounds relating to ableism, racism, and intersectionality that spontaneously erupted during the conference. He also facilitated an end-of-conference drop-in psychosocial space. Another therapist was available for short one-on-one sessions with conference attendees to provide a more individualized container of support. Notably, one therapist made a reflective guide to help participants process their emotions during and after the conference. This guide was sent to every participant the day before the conference. The guide offered suggestions for self-support in recognition that self-care is essential to staying open to what others are sharing, as well as honouring one’s own boundaries. Taking care of mind, body, and spirit were recognized as integral to deepening awareness and integration of new information and knowledge. The guide also recognized that for those who have experienced psychosocial trauma due to racial identity, disability, or other markers of experience, being in spaces where these oppressions are being discussed – especially in the presence of a diverse audiences – can be distressing and even re-traumatizing at times. Participants were encouraged to check in with themselves regularly and only participate to the degree that they are comfortable. The guide also included recommended readings and links to therapy services. Here are a few reflective questions from the guide that participants pondered during and after the conference:

As you listen to speakers and participate in conference events, consider the following questions to enrich your experience and integration of the material:

1. What beliefs and/or biases do I hold about childhood disability and race? Where did I learn these beliefs/biases? How are these maintained by wider social structures?

2. What comes up for me as I listen to speakers and the personal experiences that they’re sharing? What am I curious about? What makes me feel uncomfortable? How do my curiosities and discomforts relate to my own identity?

3. What have I learned from each speaker about childhood disability, race, and how these identities intersect? What have I learned about ableism and racism? Why didn’t I know these things before? Or, how does my own personal experience and knowledge of disability and race relate to what each speaker has shared?

4. How am I privileged? In what ways?

5. What am I taking from each presentation? How will I incorporate this knowledge into my daily life?

The inclusion of psychosocial support provided by racialized therapists with race and disability experience provided us with a way to hold space for the myriad of complex emotional responses that arose when discussing research with disabled and racialized people. We encourage future researchers to do the same and to enlist support services for the deeply traumatic work of looking at ableism and racism. We also encourage future researchers planning to hold events similar to the ‘Listening the Margins’ conference to consider crafting their own event reflection guides that are tailored to their event questions, topics, and audience with a view to providing a means of support to those who may not wish to reach out therapists. Readers may wish to contact the third author for a copy of the guide.

Building Tools

As part of our Noticing Silences in Research and Building Clinical Tools Interactive session, we engaged audience members and participants in generating ideas to better support racialized disabled children, youth, and their families in clinical settings. In the context of people living with severe eating disorders, the case has been made that clinical tool development should not occur without tapping into the direct lived experiences of these sufferers (Wetzler et al., 2020). Following this advice, using Zoom breakout rooms, we endeavoured to engage the audience in facilitated discussion focused on developing clinical ideas and tools to support racialized families. The ideas generated were wide-ranging, including such things as improving language services in hospitals, not talking to parents in an infantilizing way, including Indigenous wellness spaces and rooms at the hospital, and engaging staff in cultural safety training. Alongside best practice guidelines for anti-racism and culturally safe clinical care, these ideas were summarized and broken down into themes. A decorative and easy-to-read digital report is being created and sent out to all children’s hospitals and clinics across Canada in June, 2023 in an effort to better support culturally safe and anti-racist care.

Theoretical and Methodological Discussion and Conclusion

In this reflective paper, we contemplated the lessons learned from a 2-day national conference on childhood disability and race. Specifically, we crystalized the lessons learned at the conference and how we can use them to generate a national qualitative research program dedicated to exploring the neglected interface between childhood disability and race. We also hope that our lessons will help future decolonizing researchers seeking to work ethically in the space of ableism and racism among disabled children and families. Below, we offer a brief empirical, methodological, and theoretical discussion for future conference organizers on the design and facilitation of decolonizing conference agendas.

Acknowledging the broader academic and healthcare contexts that have devalued the art and praxis of listening, we discussed the importance of centering listening in research concerning childhood disability and race. As a theoretical and methodical tool outlined by scholars, such as Arthur Frank (1998), we suggest that it is critical to use listening as a concept to engage racialized disabled children, youth, and their families, and to understand their narratives. Listening is a humble and subversive act that returns power and ownership back to marginalized communities. Listening has been undervalued as a research and clinical tool and, arguably, has become a lost art in contemporary society (Back, 2007). Indeed, in their Indigenous “cultural humility” approach, the First Nations Health Authority (n.d.). suggests that acknowledging the self as a learner and listener is a powerful act when engaging with Indigenous communities and working toward culturally safe healthcare encounters. We encourage future conference organizers to embrace the concept of radical listening in the planning and organization of decolonizing conference agendas.

Drawing on the work of bell hooks, we also suggest that when working with racialized disabled children, youth, and families, it is also important to draw on the methodological and theoretical concept of centering the margin (Louis, 2007). To focus on the margins, Whiteness needs to be actively and intentionally de-centered from childhood disability research and care, which is a radical methodological and theoretical act that entails intentionally focusing and amplifying peripheral stories and lives (Walker, 1999). Although the margin often associated with marginality and oppression, it is important for conference organizers to note that the margin can be a place of radical possibility and change that forges new places for openness and alterity (Walker, 1999). At our conference, we intentionally centered the margin by carefully listening to lived patient and family experience experts who shared their stories of what it is like to live at the intersectional space between childhood disability and race. In this way, attending to lived experience can also be an important theoretical and methodological tool that future researchers can use to amplify the margin. We also addressed the importance of using and drawing on lived experience in the development of clinical tools and practices that might better support racialized disabled children and families. Indeed, clinical tool and practice developments should not happen without being informed by the voices of members from these communities. Other researchers have attended to the margin in different ways by, for example, centering gender and the environment (Gough et al., 2017). From this, we hope that future researchers understand that it is imperative to de-center Whiteness to make space for marginalized voices.

We also suggest that decolonizing researchers and conference organizers seeking to do similar work may think about intentionally integrating the arts and art-disseminations into program agendas (Hurley et al., 2014). There is much evidence to suggest that the arts promote more embodied and affective ways of thinking about ableism and racism, increasing the probability of empathy and resonance for audience members. This is likely because the arts promote polysensory ways of experiencing social phenomena beyond text and writing alone. We encourage future conference organizers to liberally engage in the arts at future conferences, including engagement with arts-based research.

When engaging emotionally charged subject matter, we encourage future conference organizers to consider integrating psychosocial support services and care into conference agendas. Although research and care have historically been regarded as separate silos, we suggest that psychosocial support and resources are critical to the creation of safe, decolonizing research spaces. As we have observed throughout the past 3 years of engagement in equity, diversity and inclusion work, this labour is emotionally taxing (Eaton & Warner, 2021), especially for racialized people who find themselves re-living traumatic stories over and over again and who are asked to take on EDI work more often than their White colleagues. Researchers may not have the skills or abilities to manage the weight of the emotional issues that often erupt in anti-racist spaces. At our conference, therapists helped us to hold space for emotional responses to ableism and racism. Future researchers may wish to give more attention to the cultivation of emotionally safe places that rely on the skills of experts to help hold the work of ableism and racism.

Finally, we suggest that before embarking on any decolonizing research trajectory, researchers have a responsibility to first acknowledge and name the ways in which research has supported colonial violence. The role that research has played in perpetuating colonization must not be silenced, ignored, or sidestepped. Decolonizing research must be grounded in transparency, an ethic of care, a dedicated commitment to reducing power imbalances, reflections on privilege, relationality, and respect for the land. This reflective article unpacks how sitting on the margins has allowed us to occupy a place of discomfort and creativity that has helped us to disrupt dominant discovaurses and create space for the hidden narratives of racialized disabled children and their families.

Supplemental Material

Supplemental Material - Listening to the Margins: Reflecting on Lessons Learned From a National Conference Focused on Establishing a Qualitative Research Platform for Childhood Disability and Race

Supplemental Material for Listening to the Margins: Reflecting on Lessons Learned From a National Conference Focused on Establishing a Qualitative Research Platform for Childhood Disability and Race by Fiona J. Moola, Tim Ross, Aliya Amarshi, Aman Sium, Alyssa Neville, Nivatha Moothathamby, Beth Dangerfield, Tamara Tynes-Powell, and Tharanni Pathmalingam in International Journal of Qualitative Methods

Supplemental Material

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Social Sciences and Humanities Research Council of Canada Connection Program.

ORCID iDs

Fiona J. Moola

Tharanni Pathmalingam

Supplemental Material

Supplemental material for this article is available online.

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