Introducing the Issue
Over the past several decades, mad studies as a field of scholarship and research has risen as an impactful counter voice and perspective to the psychiatrization of people’s realities, especially for those involved with psychiatric systems.1 In the case of children and youth, mad scholarship has drawn attention to the ways in which psychiatrization is intertwined with how “children/youth” are socio-politically constructed as a social group.2 Mad challenges are drawing attention to the ways in which “psychiatrized childhoods” are not homogenous, but that young people’s psychiatrization is organized around intersecting embodied experiences of their mental states with their race, class, gender, gender identity, sexual orientation, age, ability, Indigenity, and geo-political geographies.3 As strong advocates for young people’s citizenship and inclusion in processes and practices that impact their lives, critical youth studies suggest that models and frameworks of youth engagement are important for supporting diverse young people’s wellbeing and lives. The adoption of the principles and practices of youth engagement in the Canadian child and youth mental health sector has led to the inclusion and participation of young people as service users in the development, implementation, and evaluation of mental health policy and service programing.4
Underlying youth engagement efforts are beliefs that having young people’s experiences inform decision-making will result in more inclusive service and policy frameworks, as well as an improved system – a system representative and responsive to young people’s needs and preferences.5 Research can be a site for anti-oppressive engagement. Adopting the ethics of representation as a framework of understanding and drawing on critical and feminist perspectives, as well as my experiences using participatory action research approaches, I consider the ethical and epistemological tensions associated with conducting research with children and youth positioned as “mental health service-users.” Against the backdrop of young people’s psychiatrization, I examine the tensions associated with the “adult gaze” – the power and authority afforded adults and the ways in which “being an adult” influence, organize, and restrict the interpretations, and subsequent representations we can make of children and their lives. Essentially, I bring into question unexamined assumptions that engagement, inclusion, and participation are enough to result in an anti-oppressive shift in institutional power from adults to children given the complexity of adults’ social power over children and their lives.
I open with a discussion of the ethics of representation as a framework for revealing the limitations of youth engagement and participatory research approaches in achieving their goals of emancipatory youth engagement. The ethics of representation challenges researchers to consider the ways knowledge produced through research, as an institution, is deeply implicated in processes that have produced and continue to reproduce the misrepresentation and erasures of the epistemologies – the knowledges and ways of knowing – of marginalized people and groups within society.6 Applied to research with children and youth positioned as mental health service-users, I examine the tensions associated with the “adult gaze;” in particular, the ways in which adults’ values and beliefs about children’s “competence” and “best interest,” operationalized through theories about childhood, policy, legislation, and institutions and how these practices intersect with the children/youth’s psychiatrization. These values and beliefs are the basis for powerful adult-centered rationales for restricting, curtailing, and ultimately, excluding young peoples’ epistemologies from the mental health theories and practices intended to explain and support their lives. Next, I explore the principles and emancipatory goals of consumer-led/survivor-led research as articulated by the adult consumer/survivor research movement. I consider its possibilities for mental health research and practice with children and youth as service users given the complexity of adult-child relations and the complexity of the social power of adults over children and their lives. I conclude by proposing strategies for moving from participatory to child-led/youth-led research, for the development of mental health theories and practices led by young people’s epistemologies – their knowledges and ways of knowing.
The Ethics of Representation
Broadly, the ethics of representation refers to the good and harm that can result from the ways in which we, as researchers, represent others.7 Under the purview of relational ethics, critical and feminist scholars scrutinize the significance of the social positions and power differentials between the researcher and the people whose lives are under study. Notions of “researcher objectivity” as an apolitical stance or gaze are challenged, and instead the researcher is understood as positioned and located within the research and its processes. Throughout, the researcher’s choices, decisions, and actions are understood as organized by their social identities and subject positions, and by institutionalized relations of power around which those identities and positions are organized. In other words, from choosing the research topic, theories, questions and design, and collecting and analyzing data, to how the findings about people and their lives will be reported are influenced and organized by researchers’ intersecting embodied experiences of race, class, gender, gender identity, sexual orientation, age, ability, Indigeneity, migration status, and geo-political locations. These embodied experiences are the stance from which we can observe, and thus, know the world. They form the gaze from which we see and know the people whose lives we study, who, within the research process are institutionally positioned as “the Other,” while we, as the researcher are positioned with the authority to construct their lives.8
In our institutional roles, researchers take the details of people’s lives, interpret those details, and then represent those interpretations as knowledge. We decide what details are important, and in what ways those details should be represented. We are ultimately positioned with the institutional authority to decide “the Other” – who the other can be, how their realities will be constructed, for instance, by deciding the ways we describe the people and their lives, which stories and what metaphors to feature as outcomes of the research. Putting it all together, representations of others are understood as productions and reproductions of relations of power with the researcher in their institutional role, positioned with the power and ultimate authority to construct people and their epistemologies.9
Critical and feminist scholars not only argue that we are not objective, but importantly that we are not capable of objectivity because we can never strip or bracket our race, class, gender, sexual orientation, age, ability, and geo-political locations from the research and its processes – in the same ways that psychiatrized childhoods are not homogeneous and instead are, for example raced, classed, gendered, aged, and disabled. Our stance and gaze make it possible for us to see some dimensions of social life, while restricting others – and regardless of how close we may be positioned in relation to the people whose lives are under study, we still know their lives from a perspective of relative privilege. The privilege we hold is as a researcher – socially sanctioned to create knowledge about other people and their lives.
From a relational perspective, many argue that an ethical practice is for the researcher “to make their gaze transparent” by disclosing their identities and social positions, not as a list of characteristics, but for how those categories and positions organize our interactions with and interpretations of others.10 As suggested by Tamas, “as a researcher, you may locate your epistemological claims, theoretical allegiances, and positionality on the various axes of recognized difference, but perhaps you also ought to mull over what your work cultivates and cuts off in you, what brings you to it, what you are looking for and thus likely to find.”11 It is not enough to show how researchers produce interpretations from the data, but that we locate ourselves and the interpretations within the ideological and institutional contexts from which the accounts are produced.12 Relational researchers argue that unless we reveal our “selves,” or perhaps more accurately, our “politicized selves” for scrutiny, we run the risk of misinterpreting ourselves and the people with whom we work as researchers. The question becomes how do we account for our “politicized selves” – our social positions and the positions of social power we occupy – in our interpretations and subsequent representations of others, their knowledges, and ways of knowing? In other words, because objectivity is not possible, our reflexive practices of making our gaze more transparent may not be enough to address power differentials; and instead, we may need to move to emancipatory ethics – to processes and practices for democratizing knowledge and its production.
Emancipatory Ethics: The Democratization of Knowledge and Its Production
As a social group, the people whose lives are under study, by virtue of being studied are positioned as subjugated – their epistemologies subjugated by the epistemologies (the knowledges and ways of knowing) of the researcher. Since our self-understandings and our renditions of people are not apolitical, the challenge becomes how to interrogate the effects of the epistemological differences between the researcher (privileged, the expert of knowledge and its production) and the people whose lives are under study (subjugated, constructed as the “Other” in relation to the expert).13 Swartz calls for an emancipatory ethics of research grounded in a commitment “that the marginalized have a moral right to own and control knowledge produced about them.”14 Such a commitment requires a shift in our understanding of how people whose lives are under study should and could participate in research. It requires a shift in understanding whose epistemologies should lead and dominate knowledge and its productions. The ultimate goal is a praxis guided by the democratization of social relations, and that this democratization needs to consider the intersections of people’s experiences and social locations.15 Similarly, both youth engagement and participatory research approaches are also premised on the goals of democratizing social relations between adults and young people. However, is engagement, inclusion, and meaningful participation enough to achieve a democratization of knowledge and its productions?
Youth Engagement and Participatory Research: Intent versus Impact?
The emancipatory goals of youth engagement and participatory research are grounded in a commitment to including children and youth, through citizenship-building and meaningful participation, in both the production of knowledge (that is, research) and the use of that knowledge to inform areas of their lives from which they have been marginalized and excluded (that is, policy and service planning, development and delivery). Within these frameworks, children and youth are viewed as social actors in their own right, as agents, not objects of social processes, and thus, positioned alongside adults as key stakeholders, co-designers, or co-researchers.16 Youth agency is not considered passive or as an ability or capacity that a young person grows into as they move closer to adulthood. Instead, children and youth are recognized as legitimate knowers in their own right, challenging the notion that adults are the only legitimate knowers. Both youth engagement and participatory research approaches challenge tokenism, and instead argue for the meaningful participation of youth – having the power and authority to influence decisions and decision-making processes.17 Thus, engagement, inclusion and meaningful participation are promoted as the strategies or means for democratizing adult-child relations. Youth citizenship, that is, youth as politically engaged participants, is considered achievable by having young people, as individuals and as a social group, actively involved in identifying and solving problems and addressing issues that affect their lives.18
The advances made by youth engagement and participatory research approaches towards democraticizing adult/child relations cannot be understated; however, despite these advances one major concern remains.19 Although we have youth influencing policy, service, and research, their engagement, inclusion, and participation are still grounded in particular constructions of childhood that essentially bring their epistemic agency into question. Historically and culturally informed, generally dominant constructions of ideal childhood and of adult-child relations have adults positioned as benevolent caretakers of childhood, children, and children’s lives.20 Children are positioned as needing this benevolent care either to protect their innocence or prevent their derailment towards adulthood, and thus protecting adult society.21 As a culture of protection, the underlying assumption is that these adult-child relations are both natural and inevitable, which then allows for adults, as a social group, to act on behalf of children without having to account for their “politicized selves.”22 As a social group, it is still adult knowledges and ways of knowing around which policy and research agendas about children’s mental health are organized.23
As a form of “epistemic injustice” or “epistemic violence,” children as a social group, like other marginalized groups, through institutional mechanisms and processes that deny their legitimacy as knowers, do not have the same social power to have their knowledges recognized and included in, for example, theories about their mental health.24 Moreover, this denial is not only organized around age (childhood) but also organized around race, class, gender, gender identity, sexual orientation, ability, Indigeneity, migration status, and geo-political locations.25 As noted by Lane, Blank and Jones, “the concept of representing children’s voices as a way to recognize their perspectives has resonated strongly with those who engage in research with children. We acknowledge that the idea of research with children rather than on children is reflective of a genuine belief that it is liberatory and empowers children. Yet, without critique of the underlying assumptions at play in the complexities of researcher relationships, attempts to represent children’s voices may actually reproduce power differentials in unintended ways.”26 Participatory approaches still operate from a culture of protection premised on notions that the adult-child research relationship consists of the adult creating and giving spaces for meaningful participation to the child or youth.27 This positions the researcher/adult as generous, and the researched/child as the beneficiaries of a “gesture of [adult] humility.”28 The intent may be inclusion and meaningful participation but the impact, as noted above, has been the masking of power differentials between adults and children that essentially maintain children’s epistemologies and epistemic agency as subjugated and marginalized.29 Despite efforts to close the gap between children/youth and adults, critical and feminist scholars remind us that it is ultimately the researchers’/adults’ epistemologies of children and youth that are institutionally privileged. The result has been the continued reproductions of the social conditions for children’s marginalization at the hands of adult-made mental health practices and institutions.30 The main ways in which these conditions are reproduced in research is through the “adult gaze” – through intersecting values and beliefs about children’s competence and best interests.
The Adult Gaze: Ideologies about Children’s Competence and Best Interests
The “adult gaze” is comprised of two complex and intersecting ideological systems around which childhood, children, and adult-child relations are constructed. These ideological systems are the values and beliefs about 1) “children’s competence” and 2) “children’s best interests.” Constructions of children’s competence have young people in adult-child relations positioned as “not fully formed” and thus compared against adults, “less competent,” while children’s “best interest” have adults positioned to “know best on behalf of children.” Both belief systems go hand-in-hand with underlying assumptions that a legitimate knower is a competent knower and that when an adult is representing a child, they are doing so with an apolitical stance, and that through their benevolence as adults, the perspectives and best interests of the child are accounted. As noted by Veale, “by positioning children as ‘becomings’ rather than ‘beings,’ adulthood defines itself in a territorial way – it commands the present, and hence legitimatizes the denial of rights of non-adults.”31 Although treated as natural and inevitable these ideologies are a consequence of specific power arrangements that position the child as not fully developed and consequently, not fully knowing.32
When occurring in conversations around children’s mental health, beliefs about “competence” and “best interest” intersect with other prejudices about “mental illness” and can operate as potential factors for children’s [mis]representations by adults. As features of their psychiatrization, the prejudices include beliefs that having a mental illness signals a diminished competence to knowing, and capacity for making decisions that are in one’s best interest. For psychiatrized children and youth even when they are deemed “mentally competent,” their competence has been questioned by evoking concerns about their maturity, as a lack of maturity or a lack of life experience to enable them to make decisions.33 Against the backdrop of psychiatrization, together the values and beliefs about “competence” and “best interest” act as adult-centered moral rationales for curtailing, restricting, or preventing children’s agency – turning young people from agents of their own epistemologies to objects of adult epistemologies.
Emancipatory ethics asks us to go beyond processes that rely on engagement, inclusion and meaningful participation and to consider practices that center the epistemologies of children and youth, while importantly, decentering our epistemologies as adults.34 This pushes us to move away from asking “can we” center children’s epistemologies? The dilemma is how do we, as researchers, represent children and youth without centering our epistemologies as adults, when what is institutionally recognized as legitimate is based on and dominated by adult knowledges and ways of knowing. When adults, in relation to children, are constructed as being more competent and knowing better what are in young people’s best interests, how can young people’s perspectives be centered? Suggested is a move away from a culture of protection which can undermine children’s agency “to see[ing] children not as Othered, but as Other-wise – having a different way of knowing.”35 The notion of moving away from a culture of protection is aligned with calls from within the adult consumer/survivors research movement that have challenged assumptions that having a seat – having a voice – at the research table has been enough to change their marginalization and exclusion from the theories and theorizing intended to serve youth mental health, wellbeing, and lives.
Learning from the Adult Consumer-led/Survivor-led Research Movement
For several decades, adult psychiatric consumer/survivors/ex-patients have been challenging the idea that having mental health service users/consumers/survivors/ex-patients at the table is enough to overthrow the hegemony of psychiatry that defines their realities and lives. Psychiatric consumer/survivors/ex-patients have been talking back to psychiatry and to mental health researchers, challenging the ways in which they continue to be subjugated by psychiatry as an institution despite participatory research approaches.36 As argued by disability scholar Jijian Voronka,“Our ‘inclusion’ needs to not only be premised on helping to support those made marginal, but also orient towards dismantling systems of oppression that create and sustain our subordination. Our work as disability activists and advocates is to continue to keep an eye on inclusionary practices, and how they can at once improve, change, and sustain our position as subjugated peoples as we intersect, resist, and incorporate into governing ruling relations.”37 The main criticism is that even in participatory research, it is still psychiatric epistemologies that lead the mental health research agendas with psychiatrized epistemologies pushed to the margins, coopted within those research agendas. Instead, the consumer/survivor research movement argues for a shift from consumer/survivor “involved” to consumer/survivor “led” research, arguing that leading with consumer/survivor/ex-patient epistemologies can shift institutional power.38
Learning from the adult consumer-survivor movement, our theories about children’s mental health would look very different if the theorizing started from the subjugated knowledges of children and youth.39 As noted by Filson when discussing the reason why systems need to be built on the knowledges and ways of knowing of adults: “…until we are able to use our own words to tell our own stories, the context we find ourselves in – in this case, the psychiatric system – says our stories for us and usually gets it wrong… Being able to tell your own story – not the illness story – sets a new social context – one in which Mad people are seen in a new light…healing happens in the restorying of our lives.”40 Although the adult-child power relations cannot be levelled, a strategy for addressing young people’s marginalization can be a similar call to action to move from co-design or participatory research to “child-led/youth-led” research, that is, for mental health research and the development of mental health theories and practices led by children’s epistemologies. Such action would require a shift in the ways childhood, research about children’s lives, and research with children are conceived and conducted by adults. Such action requires epistemological strategies that actively center children’s knowledges and ways of knowing while simultaneously decentering adults’ knowledges and ways of knowing. The aims are not only participation and inclusion, but that psychiatrized youth have the power to influence decisions that impact their lives and that this power and their decisions are built into the architecture, operations, and mechanisms of systems. This requires that adults reimagine their roles and essentially find ways to move out of the ways of young people.
Conclusion: Epistemological Strategies for Moving from Adults to Children Know [Best]
Turning back to the ethics of representation, critical and feminist scholars would suggest that we start with an acknowledgement that the power differentials between adults and children can never be levelled, thus the goal of equality in adult-child relations is not possible.41 As stated by Tamas, “Egalitarianism, authenticity, and reciprocity are laudable guiding principles but they rarely, if ever, seem to manifest as deliverables. They may be impractical. This is not cause for despair; inequality is not necessarily a synonym for oppression.”42 Instead, there is a call for a responsible use of power, advocating a strong reflexivity that attends to the ways differences between researchers as adults, and children as participants or respondents shape the research process. The goal being the democratization of knowledge and its production by centering children’s epistemologies while simultaneously decentering adults’ epistemologies, thus bringing into question how to incorporate our subjectivities yet refrain from centering our experiences and irresponsibly [mis]interpreting those of children and youth.43 Psychiatrized youth, in their calls for anti-oppressive practice in youth care work, suggest that what is needed is a positioning of their knowledges, ways of knowing and ways of being, not as an outcome of inclusionary practices, but as the architecture of the systems intended to support their wellbeing and lives – that is, calling for youth to be positioned as “architects [of hope].”44
Critical researchers suggest that representing others needs to begin with an engaged reflexive stance, suggesting strategies that are grounded in a recognition of the ways in which the people whose lives we study know and represent their worlds. One such strategy is to pay attention to the ways the children and youth represent, label and describe themselves and their realities, not as “giving voice,” but as paying attention to what they know and how they know the world and themselves in it.45 The strategies for mitigating potential misrepresentations include using designs and methodologies that throughout the research – as a knowledge production process – decenter the researcher by having children tell their stories of the meanings made of their experiences and lives. Such methods include member-checking strategies, and comparative analyses seeking commonalities across differences for how children conceptualize and represent their lives and realities.46 The goal being immersing oneself in the challenges and perspectives of children and youth.
Other reflexive practices include interrogating our emotions, motivations, identities, and embodiments that affect the research processes. And, taking responsibility for the interpretations we make by clarifying our interpretive perspectives and lens from which they come, bio-medical, psychological, feminist, critical – not listing them as characteristics, but as embodied experiences and how they inform our constructions.47 What is required rests on imagining into practice a different way of doing research, a shift in understanding who in research controls ways of knowing and shifting that control to children and youth by setting up research agendas based on children’s ways of knowing, moving research outside of the academy into public spaces, into the spaces occupied by children and youth. Again, this requires that adults make commitments to move aside and allow young people to occupy with the power to influence decisions and spaces traditionally occupied by adults and adult epistemologies.
Although not exhaustive, the strategies highlighted here offer a beginning for imagining shifts in mental health research about children and their realities. Certainly, young people’s meaningful participation is important – referring to children and youth having the power to influence research decisions and decision-making processes. However, the challenge is really to look beyond meaningful participation to approaches for epistemic justice. Epistemic justice can be achieved not only by researchers, as adults, reflexively interrogating the ways in which their interpretations may be misrepresentations of children’s lives, but by the ways in which ideologies of competence and best interest come into our interpretive processes and restrict, curtail, and deny young people’s epistemic agency. The suggestion is to move away from relying on child/youth-involved research to child/youth-led research – that is, the setting of research agendas, designs and methodologies based on young people’s epistemologies – diverse by race, class, gender, gender identity, sexual orientation, age, ability, Indigeneity, migration status, and geo-political locations. This requires a different kind of leadership from adults, and a different understanding of psychiatrized childhoods, and of child and youth leadership.
Such a suggestion, however, is not immune from either the stigma of mental illness, nor the adult gaze; and instead, can trigger concerns about whether children and youth, and particularly, psychiatrized children and youth are old enough, well enough, capable enough, or trained enough to understand and assume the responsibilities and pressures of “leading” ethical, rigorous, and credible research. Not necessarily surprising, similar stigmatizing and marginalizing concerns have been launched against psychiatrized adults as consumers, survivors, and ex-patients throughout their own advocacy that mental health theories and systems be organized around their ways of being and knowledges.48 Apart from reproducing stereotypes that “having a mental health issue” implies a diminished capacity or an incapacity, in the case of children and youth, it implies that “child/youth leadership” must be the same or to the standard of “adult leadership.” It assumes that rather than “leading as children and youth,” young people are expected to lead as “mini-adults” or “adults-in-the-making.” Furthermore, it assumes children/youth and adults are pinned against one another, failing to recognize that young people want to be supported and guided by adult leadership.49
These assumptions reflect certain constructions of “competence,” “leadership,” “expert,” and “adult/child/youth relations” that need to be interrogated. Along with their call to be positioned as “architects” and their epistomologies as the architecture of the systems and processed intended to serve their lives, psychiatrized youth suggest refraining from adopting a “one-size-fits-all” approach, and instead, suggest that strategies – that is, the practices of democratizing knowledge – be individualized to the unique intersections and situated knowledges youths occupy along with adults.50 In other words, designing strategies for democratizing knowledge and its production also needs to occur with children and youth and by centering their epistemologies and practices. A child/youth-led research agenda challenges us to develop and adopt practices that bring together experts with different ages, knowledges, abilities, capacities, and access to social power, without, in this case, “adult-experts” taking over and dominating “child-experts.” The main point of clarification is that the onus falls on adults to make the shift to be led by how children and youth, and particularly by how psychiatrized children and youth, see, experience, and know the world. In this shift, adults do not abandon being adults; instead, adults become scaffolds upholding an architecture of theories and institutions constructed on and around child and youth epistemologies – that is, led by young people’s ways of being, knowledges, and ways of knowing.