Moving Beyond “Inclusion” and Towards “Transformation”: Intersectional Life Story Narrative Research on Aging and Neurodiversity

Abstract

“Inclusive” research has long been championed by scholars and activists in the fields of critical disability and critical gerontology. Despite this, there remain gaps in knowledge, with a notable paucity of research on the intersection of old age and neurodiversity. Debates persist regarding what counts as “inclusive” and how to assess the catalytic and transformative potential of “inclusive” research beyond the level of rhetoric, particularly in the context of interviewing people with experiences of intense social exclusion. Studies on aging with neurodiversity remain influenced by biomedical discourses insofar as the focus on “comorbidity” often overshadows the exploration of sociopolitical factors. The ways in which this research creates conditions of hyper/visibility (reduction of people to their “pathology” as patients or clients) and in/visibility (disregard for their voices, strengths, and agency) are cause for great concern. Our paper asks 3 related questions: (1) What counts as “inclusive” research on aging with neurodiversity? (2) Is it possible to move towards “transformation” in the operationalization of such research? (3) How do we do it? Using our research by way of illustrative example, we hope to create a dialogue with the reader about the possibilities and pitfalls of “inclusive” intersectional research praxis.

Neurodiverse ¹ people and older adults are two unique populations that were, and continue to be, subject to paternalistic and dehumanizing processes of exclusion in research, resulting in their significant harm. Primarily viewed through ableist, ageist, and sanist social discourses of incapacity and dependence, neurodiverse people and older people have long been treated as objects/targets of (biomedical) research, rather than as partners with rights and agency. Several decades of influence from critical scholars and activists has helped to significantly shift the lens. This shift has led to a wider proliferation of empowering, participatory, social justice, and community-driven research by and with people in both critical disability (Lester & Nusbaum, 2018) and critical gerontology scholarship (Baars et al., 2013; Phillipson, 2013). Emphasis on equity, diversity, and inclusion (EDI) within more mainstream research and academic spaces has motivated some changes to research processes, practices, and goals across disciplines, sites, and sectors. For example, institutional EDI policies have required that Canadian researchers now document how the principles of EDI are aligned with research protocols (Council of Canadian Academies [CCA], 2024). Despite the progress that has been made in articulating “inclusive” and intersectional research over the past few decades, there remains a gap in research by and with neurodiverse older adults (NDOA) and their families.

The life expectancy among neurodiverse people has increased over recent decades (Ouellette-Kuntz et al., 2016; Shooshtari et al., 2012) with variations dependent on condition severity (moderate versus severe) and type (i.e., autism (Groborio-Guzman & Ducas, 2025; O’Nions et al., 2023) or intellectual and developmental disabilities (Heller, 2010)). Studies report that people labeled with mild intellectual or developmental disabilities now have a life expectancy similar to the general population, and those labeled with moderate to severe disability or Down syndrome now generally live into their 50s and 60s (Heller, 2010; Pimlott, 2019). According to Salvatori et al. (1998), “In Canada, those who were born before 1945 represent the first significant group to grow old” (pg. 249). Factors associated with increased life expectancy are related to the move from institutional to community care, improved nutrition, and better access to both appropriate health care and social services (Salvatori et al., 1998; Wark, 2025). Nonetheless, the influence of biomedical discourse, whether explicit or implicit, continues to influence research and practice, rendering NDOA both hyper/visible (a process in which people are reduced to their “pathology,” “limitation,” or “problem” by virtue of their status as patients or clients) and in/visible (their voices, strengths, and agency disregarded). Deeply entrenched overlapping and interlocking systems of oppression to which people were/are subjected (including ageism, ableism, sanism, classism, racism, colonialism, and sexism), continue to have a negative impact on health and well-being.

Defining and operationalizing “inclusive” research by and with NDOA remains both a contested and negotiated terrain. Disability justice advocates and their allies have critiqued the inherently neoliberal interpretation of “inclusion” that shapes most governmental and institutional policies in Canada. ² This version of inclusion tends to focus on the micro level (i.e., individual attitudes, prejudice, and interpersonal practices between workers and clients or patients). As a result, there is often an emphasis on training to create spaces of tolerance or acceptance of disabled individuals; however, these efforts typically stop short of challenging or changing the broader policies and structures in which these relationships exist (Dickson & Linton, 2025; Dunne, 2009). In essence, “inclusion” mandates often focus on trying to “squeeze” people into already existing structures and patterns to make a “better fit” for them at the micro level while simultaneously minimizing or ignoring structural change at the macro level. This approach preserves institutional comfort and authority, placing the burden of adaptation on marginalized individuals, families, and communities, who must push for recognition and justice. Moving towards “transformation” through solidarity work takes commitment at every level and the willingness to tear down long-standing hegemonic structures and practices. It requires significant effort, time, and money, which are not easily located or prioritized in a climate of austerity and governmentality across contemporary practice and research contexts.

Despite the current landscape of EDI-informed research introduced by funding agencies, universities, and communities, pressures related to mainstream ethical review processes, budgets, and pacing of research can serve to undermine “inclusion” efforts and make the move beyond “inclusion” to genuine “transformation” particularly challenging. Prolonged engagement with NDOA, their families, allies, and communities, power-sharing, and a commitment to social change, all key features of transformative research, can be compromised or made more complex within the confines of neoliberal and biomedical discourses and spaces. Still, there remains cause for hope because notwithstanding these pressures, participatory and community-driven research on the intersection of neurodiversity and aging has recently emerged and can provide insights for future work (see for example Milot et al., 2025; Wang et al., 2025).

In writing this paper, our objective is to ally with this critical body of scholarship and join the conversation by presenting our own recent work by way of example. We aim to illustrate both the possibilities and pitfalls of defining and doing “inclusive” community-driven research at the intersection of neurodiversity and aging to serve as a roadmap for others wishing to think through and develop research that moves beyond “inclusion” and towards “transformation.”

This paper tells the story of our journey of undertaking research with and about people aging with neurodiversity and their families. Over 5 years, we encountered both possibilities and pitfalls. We present these experiences to foster conversation, reflection, and debate with our readers about the limits of “inclusion” and the challenge of reaching beyond “inclusion” to “transformation.” We describe our methodology (intersectional life story narrative) and disability justice-informed research praxis to reflect on our three questions: (1) What counts as “inclusion?” (2) Is it possible to move towards “transformation” in research on neurodiversity and aging? (3) How do we do it? In using the term praxis (iterative process linking research-theory-action), we draw inspiration from Patti Lather’s critical body of work on validity in qualitative feminist research. Lather explicitly names the central feature of catalytic validity ³ as necessary to enhance the emancipatory potential of research, primarily addressing participant conscientization. In more contemporary manifestations, this concept has been expanded to include researchers and key stakeholders who are the targets of knowledge-mobilization efforts.

A Note on Biomedical Discourse and Its Influence on Scientific Research About NDOA

Our paper begins with a brief explication of the misuse of power in contemporary mainstream research on aging and neurodiversity (Pellicano & den Houting, 2022). To fully understand current manifestations of exploitation, erasure, and harm, it is important to reflect on the historical roots of biomedical discourse in health science, particularly since our work is situated in Montreal, Quebec. Montreal, and specifically McGill University, the site where our research was coordinated, was, during the turn of the 20th century, the center of the eugenics movement in Canada (Normandin, 1998). A noted example, which is documented in Normandin’s important work on the subject, is the role of J.G. Adami, a McGill professor, who was responsible for popularizing eugenics discourse in Canada (Normandin, 1998). The eugenics movement influenced scientific research and medical practices in ways that are both shocking and distressing (Banerjee, 2025; MacLaren, 1990). The eugenics movement is tied directly to ableist, sanist, racist, ageist, classist, and colonial ideologies (McConnell & Phelan, 2022). People from marginalized communities (most notably disabled, racialized, and Indigenous communities and their intersections) were subject to inhumane and often violent procedures without their prior knowledge or consent, largely because they were labeled as inferior or dangerous to society by those in positions of authority, including medical professionals and state actors (McConnell & Phelan, 2022; Powell, 2021). Reproductive, population, incarceration, institutionalization, and immigration controls were used to limit the overall numbers of groups such as those with mental health challenges, neurodiversity, and other forms of disability, as well as to curtail their active participation/free movement in society. ⁴

Although health and social care research on the intersection of aging and neurodiversity is relatively new, it often continues to implicitly operationalize this long-standing dominant discourse of biomedicalization that underpinned the eugenics movement. Biomedical perspectives on “comorbid medical problems, impairments, and disorders” ⁵ arising from aging and neurodiversity continue to overshadow the exploration of sociopolitical factors contributing to mental and physical health challenges amongst NDOA (Hamdani et al., 2017). While medical research on the aging process of people with neurodiversity is important to the development of new treatments and health services/practices, the way in which this research has simultaneously created conditions of hyper/visibility and in/visibility is cause for much concern (Pellicano & den Houting, 2021). This problematic discourse also emerges in the recent caregiving literature on aging and neurodiversity wherein the sole focus on carer challenges arising from parallel aging tends to overshadow the consideration of reciprocity and relational autonomy of both aging carers and NDOA (Tejo Prasanna & Nayak, 2025).

In contrast, an increasing number of interpretive studies have sought to amplify the lived experiences of neurodiversity and disability (Craddock, 2025; McNally et al., 2024), including a dedicated special issue by Bozalek et al. (2024) that examines intersections with neurotypicality, mad studies, and critical disability studies. There is also recent lived experience research addressing aging and disability that generally focuses on people with specific identities, such as those labeled with intellectual disability (i.e., Milot et al., 2025) or autism (i.e., Viner et al., 2024; Hwang et al., 2017). Research that engages with the broader concept of neurodiversity beyond its origins in autism studies to include intersections with intellectual disability and other identities (Chapman, 2020; McLennan et al., 2025) has recently begun to emerge (i.e., Brotman et al., 2021; Zhang et al., 2025).

Setting the Scene

Our Quebec-based research project explored experiences of social exclusion and inclusion among people aging with neurodiversity and their carers (in our study carers are parents and siblings). Our goal was to collect people’s stories about their lives; their experiences of growing older; their strengths, hopes and dreams; their housing realities, needs, and wishes; their experiences with health and social care services; and their social networks and supports. Intersectional life story narrative and arts-based methods guided our interviews with these cohorts. We also spoke with service providers from public and community sector services using semi-structured thematic interviewing techniques to gain their perspectives on the realities and challenges facing older adults living with neurodiversity and their families. Our objectives were to (1) raise awareness about the life course experiences of NDOA and their families; (2) offer recommendations for system changes grounded in people’s voices, experiences, and perspectives; (3) contribute to the development of “inclusive” policy and practice across sectors; and; (4) ally with community activists to advocate for programs and policies that better address the realities of, challenges facing, and agency enacted by NDOA and their carers.

Our project took place between 2020 and 2025, with the early phase of work occurring during the outset of the COVID-19 pandemic. This resulted in multiple delays in engagement with our community partners (who were all scrambling to provide support to clients and members during intense periods of uncertainty and lock-down), in recruitment and interviewing both NDOA and carers (due to issues of access, safety, and availability), and in the requirement to amend our research protocol seven times throughout the study to adapt to ever-changing contexts and conditions.

We worked in partnership with two local Advisory Groups (AG) (in Montreal and Quebec City) made up of NDOA, carers, and service providers from both public sector health and social care services and community-based organizations in both aging and neurodiversity sectors, with varied experience working with and for NDOA locally and provincially. Our AG members shared their perspectives, guidance, and were actively engaged throughout the study, influencing design, recruitment, data collection, analysis, and knowledge-sharing priorities and activities.

Epistemology and Positionality

Attending to epistemology and positionality is an essential mechanism of accountability in critical research (Granek, 2013). To honor the transformative disability justice principle of “nothing about us without us” (Anonymous 1 et al., 2022; Berne et al., 2018), people with disabilities, including people living with neurodiversity, played an important role in our project design and process as both researchers and AG members. Jaylenn Tourangeau, non-binary neurodiverse Indigenous Academia Research Methodology Consultant and Traditional Knowledge Keeper joined our team in 2022 after two of our participants shared that they were Indigenous. We worked with, and learned from, Jaylenn to ensure we honored the dignity and rights of our Indigenous participants, and to support our own learning about decolonizing research (Tuhiwai Smith, 2013). We also note here that the principal author is a 60-year-old woman living with chronic illness and disability, and who is the proud mother of a neurodiverse adult child. Critical reflexivity (Daley, 2010; Ide & Beddoe, 2024) was woven throughout our project as research team members also reflected upon their identities and social locations, for example, as women, as disabled people, and/or as carers with personal, communal, and/or professional experiences with and in neurodiverse communities. We identified and critically reflected on our personal responses shaped by our intersecting social locations while striving to distill each narrative according to the participant’s account. We treated knowledge as relational and co-constructed rather than as something “extracted” from participants. This reflexivity shaped how we interpreted participants’ narratives, prompting attentiveness to power, context, and meaning-making, and reinforcing an interpretive epistemology grounded in participants’ lived experiences. We employed member-checking by sharing each narrative with participants to ensure their stories were accurately and respectfully represented in the written accounts (Ide & Beddoe, 2024).

Theoretical Framework and Methodology

The theoretical framework underpinning our study used the mutually reinforcing concepts of social exclusion (Grenier & Guberman, 2009) and the intersectional life course (Ferrer et al., 2017). The purposeful integration of these theoretical concepts helped us to conceptualize the complex ways in which relational, communal, institutional, and governmental forces shape experiences over the lifetime, and facilitated deeper understanding of the resulting precarious living conditions among those subject to social exclusion. Social exclusion has been theorized as operating on and across seven interlocking dimensions. These dimensions reflect symbolic (i.e., socio-political discourses and ideologies), spatial/geographic (i.e., home, school, work, organizations, institutions and built environments, region and neighborhood) and relational (i.e., informal and formal networks) forms. A critical examination using a social exclusion framework encourages an exploration of the dominant discourses (i.e., biomedicalization and neoliberalism) that shape power relations and the practices and processes, both explicit and implicit, that result. This includes the operationalization of professional discourses and practices of institutionalization (Dickson & Linton, 2025) and clientification (Cowger, 1998) common to the various sectors in which NDOA, their families, and communities interact.

However, understanding the complex and multifaceted ways in which exclusion and inclusion operate in everyday life across the life course requires an examination of both systemic factors and narratives across time. With this objective in mind, intersectional life course theory was utilized. Drawing on the seminal work of critical race scholars (Crenshaw, 1991; Delgado et al., 2023), intersectionality theory posits that interlocking forms of oppression that derive from intersecting social identities are lived simultaneously and cannot be hierarchically ordered or separated (McCall, 2005). An intersectional life course perspective (ILCP) (Ferrer et al., 2017) brings together both intersectionality theory and life course theory to ground an understanding of intersectionality and interlocking oppressions in the daily lived experiences of people across time and place. The ILCP emphasizes four key steps: (1) major life events, timing and the structural forces which shape these events, (2) linked lives in both a local and transnational context, (3) categories and processes of differentiation (i.e., identity, social location and processes of othering), and (4) oppression, agency and resistance. These are interconnected and highlight how structural forms of oppression are explicitly and/or implicitly embedded within individuals’ life stories and identities (Ferrer et al., 2017). The ILCP enables a shift from a focus on vulnerability (which locates risk within individual or group characteristics and/or behaviors) to the fluid and shifting sociopolitical and relational production of risk within a hegemonic society. As such, risk is reformulated as a process of othering experienced across the life course. Social exclusion and the intersectional life course can therefore be understood as mutually constituted and reinforcing across multiple dimensions. Finally, the ILCP facilitates an examination of agency, resilience, and resistance strategies.

Our work applied the intersectional life story narrative approach, one of several forms of interpretive biography (Brotman et al., 2020). This approach centers personal story within the diverse contexts in which people are living or have lived, and incorporates complexity and diversity into data collection and analysis. Although most often applied in research on migration and racialization, there have been recent attempts to adapt this methodology within critical and feminist disability research (Drummond & Brotman, 2022; Palmer, 2023). Intersectional life story narratives move beyond personal story to illustrate how individual narratives are shaped by broader sociocultural and political contexts. Data are often gathered over extended periods using multiple interviews and can include other forms of data collection. In our case, we prioritized arts-based data collection tools to enhance accessibility among people aging with neurodiversity.

Intersectional life story narrative aims to both tell people’s unique stories holistically, centering diversity and voice, while at the same time explicating experiences of social exclusion and inclusion, and identifying resilience and resistance strategies used by people to enact agency. Within the constraints of traditional research methods, some neurodiverse people might be excluded from or have difficulty telling their story. There have been several studies that have successfully incorporated various inclusive strategies with people with diverse access needs/wishes within narrative studies to ignite the in-depth narratives of neurodiverse people (Booth & Booth, 1998; Pacheco & McConnell, 2017) which we apply in our work.

In keeping with our commitment to maximizing opportunities for NDOA, their families, and service providers to share their perspectives, experiences, and recommendations for action in ways that honor and respect diversity and voice, we employed an interview strategy that prioritizes power-sharing, collaborative meaning-making, and open conversation. This included several narrative techniques designed to illicit stories: (1) creating a space that emphasized, valued, and honored the participants stories (2) conversational interviewing that is flexible and responsive to everyone’s way of telling (Pacheco & McConnell, 2017) and (3) co-constructed visual tools (Brotman et al., 2020). Throughout the storytelling process, some participants shared pictures and objects that were meaningful to them and helped illustrate parts of their stories or important people in their lives, that went beyond their words. The arts-based component of our study consisted of the co-creation of lifelines (Brotman et al., 2020) reflecting the life course experiences of NDOA, and care lines with carers (Orzeck, 2016). Arts-based tools provide a creative method to capture everyday lived experiences, access new understandings of participants’ lives, and redress traditional power imbalances in ways that conversational interviews alone cannot (Brotman et al., 2020; Shell, 2014; Silverman et al., 2020). It is this very participant-driven aspect that also makes these forms of data collection empowering for traditionally marginalized or silenced populations that have not had opportunities to tell their stories. For example, timelines (Nind, 2008) have been used with neurodiverse people as an alternative means of eliciting understanding of their daily experiences.

The total participant sample for this project consisted of 21 NDOA (45–78 years-old), ⁶ 15 parent and sibling carers (57–85 years-old) and 27 service providers across sectors in both Montreal and Quebec City, with a total of 63 participants. We interviewed a broad diversity of both NDOA and carers in terms of type of neurodiversity (self-defined), living arrangement (i.e., living with the carer, living independently in private market housing with or without support, living in a residential resource) and type of services received (i.e., none, public and/or community sector, and disability, mental health or aging services). We also diversified our participant sample according to social location including gender, ethnocultural or racialized identity, etc. We did not collect these sociodemographic data in a traditional manner by way of an itemized questionnaire, but rather, created space for participants to share their identities through conversation in ways that were meaningful to them. As such, we can report that 6 NDOA and family carer participants identified a racialized or Indigenous identity and 4 identified with an ethnocultural identity (i.e., Italian, Jewish). Four participants shared stories of immigration, either in childhood or adulthood. The gender breakdown among participants was 13 women and 8 men (NDOA) and 12 women and 3 men (family carers). The overrepresentation of women in the family carer sample is consistent with current research suggesting that women continue to represent the majority of family carers and take on more intense hands-on care responsibilities over longer periods of time (Statistics Canada, 2022). We cannot report details in a less aggregated form in our publications to ensure confidentiality, which can be a concern given the nature of holistic storytelling in narrative research.

To ensure informed consent, we used an “assent and consent” procedure developed in collaboration with our AG (see the Ethical Considerations section). AG members were also integral to our outreach and recruitment. Snowball sampling was used to ensure that we recruited participants who, at some points in their lives, were not well connected to community, health, and/or housing supports in order to capture perspectives on the challenges these individuals face due to social exclusion.

Research Design and Analysis

Our interview process centered on principles of power-sharing, conversation, flexibility, and co-creation. At all times, participants had full ownership of their stories. They decided what would be included in the final story, and they gave us permission (or not) to use all or some of their stories for the purposes of education, awareness-raising, publication, and future advocacy. Figure 1 outlines our research process and Figures 2-4 describe our lifeline process and offer examples.

Figure 1.

Research process.

Figure 2.

Intersectional lifeline model.

Figure 3.

Tina’s lifeline drawing.

Figure 4.

Tina’s intersectional lifeline.

Interviews began first with several NDOA to ground our work before augmenting the data with the voices of carers and service providers. We held 2–4 meetings with each of the NDOA and carer participants to honor people’s ways of sharing, energy, and availability. In the first meeting, the interviewer engaged in a conversation to become acquainted, explain the project, and discuss the participant’s rights in participating in the project. Amongst carers, the consent conversation most often occurred at the start of the first interview.

Meetings and interviews were held over one to six months with each NDOA and carer participant (and their chosen support person where relevant) and were dependent on external (pandemic restrictions, availability, etc.) and personal (health or family situations) factors. In interview 1, lasting 60–90 min, participants were encouraged to talk openly about their lives and the experiences that have shaped their journeys into older age. During the consent process which took place in the first meeting, participants were asked if they would like to take part in co-creating a life or care line. If they did consent to this part of the process, to facilitate the creation of the line, they were given a choice to either draw the line themselves, draw it together with the interviewer, or give permission to the interviewer to draft a line between interviews based upon the conversation, after which the participant was invited to adapt, edit and/or color it for themselves. In some instances, a draft line or pictures were shared with participants to give them a better idea of what the line was meant to represent, as the concept of a life/care line could be complicated for some. The lifeline consisted of drawing a line across a piece of paper, beginning at any point the participant determined as significant to their story (i.e., birth or any other significant event), to which their major life events, raised during conversation, were chronologically added. Participants were then asked to signify why this event was important to them (which could be negative or positive or both). While the lifeline focused on the individual journey of NDOA, the care line incorporated both carer experiences as well as those of their NDOA family member. Two lines are drawn that juxtapose major events in the life of the NDOA and the corresponding major life events and meaningful moments experienced by the carer. These structured lines were compared with thematic descriptions generated from our analysis of the narrative conversations.

In a second and sometimes third interview, the interviewer continued the conversation and shared preliminary ideas generated from interview 1 and in relation to the developing participant’s life/care line. Participants were asked to reflect further on the stories they shared. Drawing on previous work conducted by the study’s investigators, participants’ interactions with structures such as employment, housing, health and social care, criminal justice, and education were “listened for” in the stories shared by participants. This interview also more explicitly spoke to the participant’s social networks.

Finally, service providers engaged in a single semi-structured interview to explore their understanding and experience of working with NDOA and their families and to further explore challenges and opportunities for service provision. The service provider sample was diversified by years of experience, professional role, and location of work (public, community, policy or residential sectors).

All interviews were taped and transcribed verbatim. The researchers analyzed each participant’s material as a holistic unit and then moved transversally across participants and cohorts. We had three objectives for analysis which required three distinct yet overlapping strategies; namely, (1) narrative analysis, followed by (2) reflexive thematic analysis (RTA), and (3) ILCP thematic analysis. While we describe these strategies below as distinct, they were in fact operationalized iteratively, with the noted exception of first grounding our work in a narrative analysis (Drummond & Brotman, 2022) before beginning our engagement with thematic analyses within and across all three participant cohorts.

Our primary objective was to honor our individual NDOA and family carer participants by creating life story booklets consisting of a 3–5 page story, their life/care line drawings, and their intersectional life/care lines. To achieve this goal, we applied a narrative analysis strategy centering co-construction which asserts that meaning is shaped by both storytelling and social interaction (Esin et al., 2014). Researchers engaged in chronologically re-ordering the meaningful events, places, people, and perspectives shared during the interviews and sought to ensure flow and resonance, respect the authentic voice of participants, and find balance between difficult experiences recounted and expressions of agency and pride shared by participants. We continuously engaged in member-checking to determine which moments shared should be included in both the life stories and life/care line drawings during interviews and in our last meeting(s) wherein participants validated their draft stories and life/care lines in an active process of co-construction.

Our second and third objectives were inter-related and involved the thematic interpretation of data within and across all three cohorts interviewed using both reflexive thematic analysis (RTA) and theoretical (ILCP) coding strategies. Research team members engaged thematically with the data within and across cohorts in an interpretive process to identify themes using by-hand methods as well as qualitative data management software, QSR NVivo 11. RTA is a flexible qualitative approach in which themes are actively constructed by the researcher through iterative, reflexive engagement with the data. It treats researcher subjectivity as a valuable analytic resource and views themes as interpretive outputs rather than objective patterns waiting to be discovered (Braun & Clarke, 2019) as is consistent with narrative methodology. RTA involves an interplay of interpretation of the dataset, researcher theoretical knowledge, and a researcher’s skillset (Braun & Clarke, 2019; Byrne, 2022). We undertook a final pass through the data to foreground our critical analytic lens using an ILCP theory-informed strategy (Brotman et al., 2020). We see the differences in emphasis on the role of theory in analysis (influencing (RTA) versus driving (ILCP)) as compatible and not contradictory. We operationalized the ILCP iterative steps in order to more fully explicate the interplay between themes generated from life stories through RTA and the structural forces which explicitly or implicitly shape these stories; forces that are often obfuscated in people’s own accounts of events, relationships, and the meanings they attribute to them (Brotman et al., 2020). ILCP supported our explication of power relations through a critical theoretically informed interpretive lens. Both RTA and ILCP define coding and analysis as an iterative, flexible, evolving, creative, reflexive, and subjective process in which researchers pay careful attention to the voices of participants (grounded in the data) and the self (generated by the researcher who applies their own meaning to the data). Unlike RTA, the ILCP does not claim to be completely organic, but rather situates critical theory as a driving force in which “steps” are purposefully applied beyond the voice of the individual participant or researcher. According to Ferrer et al. (2017), “An intersectional life course analysis enables a rich consideration of the complex biographies of communities, a broader and more detailed analysis of the dynamics of power, and an accounting of the fluid nature of identity embedded within time, context, and space/place” (pg. 15). ILCP analysis involved “the iterative process of moving between data collection, data reduction (into stories, vignettes, etc.), data display (presenting both visual data and stories or interpretations anonymized to ensure confidentiality), and drawing and verifying conclusions” (Brotman et al., 2020, p. 477).

As a reflexive practice, our RTA and ILCP thematic analyses included journalling, co-coding each interview by several team members and discussing interpretations generated to share common and divergent understandings (for the purpose of deepening our subsequent data collection and analyses and not to reach consensus), and collectively working through emotional reactions which were rooted in our own experiences of disability and care in order to understand, process, and account for them in our analytic journey.

Throughout our analysis process, the life/care lines acted as complements to the transcripts, providing imagery to deepen the verbal transcripts and ultimately offered a fuller portrait of the participants’ lives. To illustrate this, see Figures 2-4. ⁷

Ethical Considerations

Disability justice advocates have long championed the phrase “nothing about us, without us.” Traditionally, the voices of people with neurodiversity have been excluded from research about them, owing in part to paternalistic misconceptions about their capacity for informed consent. While for some within this community, the nature of their precise challenges necessitates a relational approach, this difference should be accommodated rather than used to justify their exclusion. Given that the primary objective of this project was to explore the multidimensional concept of social exclusion for this specific population, NDOA are the most important informants. In this way, and drawing from an established tradition of research in Canada which employs the “assent and consent,” “supported decision-making” and “relational autonomy” models (Bach & Rock, 1996; Cleaver et al., 2010; Kelly, 2010; Santinele Martino & Fudge Schormans, 2018), this project prominently positioned the voices of NDOA participants, such that it was not written about them, without them. In adherence to the supported decision-making model, the assent and consent process involved acquiring both assent from the NDOA participant and consent from their supported decision-maker (i.e., tutor, curator or mandatory), but only when necessary and previously agreed upon by the participant. Even though many NDOA can make significant decisions independently, there are some who, due to the nature of their disability and systems that fail to account for diversity in access needs, engage in supported decision-making by involving close family members and/or support staff in significant decisions. Both assent and consent were indicated on the assent and consent form which was signed by the participant and their supported decision-maker when required.

The participants in this study belong to, or are related to, a group that faces stigma both for being older and living with neurodiversity. Given the small percentage of the population comprised of NDOA, even general demographic information such as diagnosis or ethnocultural identity, when taken together, can be used to determine an individual’s identity and was therefore omitted from published reports.

Moving Towards Transformation Through Knowledge-Sharing

Critical scholarship in gerontology and disability studies has identified the importance of transformative knowledge mobilization (Grenier et al., 2021; Sitter & Nusbaum, 2018). Our multi-faceted “inclusive” knowledge-sharing strategy was dedicated to improving access to material emerging from our findings by combining narratives with artwork, performance, and podcasting. The power of stories became a mechanism through which we attempted to manifest catalytic validity by bringing together our research team, AG members, participants, neurodiverse people of all ages, and those from the wider scholarly and service provider communities, thereby creating opportunities for rapprochement and mutual learning.

The participant stories themselves were embraced as important recognition of NDOA and carer identities, accomplishments, strengths, and survivorship. All our participants were proud of their stories and of their participation in the project. We cannot overstate the power and catalytic potential of this accomplishment, given how often participants have been stripped of their identities and have had their strengths overshadowed by a focus on “diagnoses, pathologies, and problems” by those meant to support them. Many participants spoke about lacking control over even the most basic personal choices and daily activities. Those in the wider community who watched, read or listened to participant stories, and subsequently provided us with their feedback, spoke of being emotionally moved in ways they had not previously considered.

To celebrate the end of our project, we held two celebration events (in Montreal and Quebec City) which included a banner exhibit (of 10 themes generated from our study using pictures drawn by participants, research team members, and other neurodiverse artists), a bilingual performance held in Montreal entitled Neurodiversity! Age together, Act together, and a reflection space in which participants sat with community members and key public and community sector stakeholders to share reflections. Participants and AG members had an opportunity to identify the names of potential community leaders, policy makers, service providers, and others to be invited to these events. The performance was choreographed by Jasmine Allan-Côté of La Gang à Rambrou, with stage props and artwork by the neurodiverse artist group from Sans Oublier le Sourire. Both organizations were part of our AG. Drawn from NDOA participant interviews, quotes were interpreted and performed in words and movement by members of La Gang à Rambrou, who were themselves aging with neurodiversity (but who were not research participants). At times poetic, at times poignant, the performance addressed aging, strengths and resilience, the challenges of the health and social care services system, housing, mistreatment, and the important role of community organizations. The performance was filmed by an autistic production company and the video shown at the Quebec City event. An accompanying reflection toolkit was created using the video as a foundation for discussion, reflection, and education. ⁸ Below are a few pictures that were taken during and after the performance Pictures 1–3.

Picture 1.

Neurodiversity! Age together, Act together. Photo credit: Geneviève Bilodeau.

Picture 2.

Neurodiversity! Age together, Act together. Photo credit: Geneviève Bilodeau.

Picture 3.

Performer, Neurodiversity! Age together, Act together. Photo credit: Jasmine Allan-Côté.

Discussion

Possibilities

We believe that our work can offer some insights for those interested in operationalizing “inclusion” in a meaningful and transformative way in their own research with and about aging with neurodiversity and beyond. In speaking to our successes and challenges, we hope to contribute to discussions already taking place across sectors and disciplines about how to define and conduct “inclusive” research. Our data collection strategy (both life story narrative and life/care line drawings) served as powerful tools of engagement with both NDOA and carers, though not without limitations, missteps, and tensions.

In general, the process of in-depth interviewing was greatly appreciated by all of our research participants, particularly amongst NDOA participants who shared with us that they had never had a chance to tell their life story in ways that were flexible and meaningful for them, despite lifetimes of service interventions as clients in the public health and social care system. Those with experience as members of community organizations felt that they had more frequent and stable opportunities to build trusting relationships, to be known for who they were, and to have their unique strengths recognized. However, some still shared that there was little time for open and prolonged conversation about their histories. The flexibility, openness, and conversational style of our interviews were welcomed and provided participants with a chance to fully direct the conversation in ways that were meaningful to them. They felt proud to be a part of the research and committed to actively participating, hoping that their stories and experiences could influence change and build awareness about their lives. It was deeply moving for us when one of the participants held tightly onto her story when she received the paper copy that she had previously validated in our final meeting. Despite having difficulty reading the words herself, she was glad to tell us she would show it to new workers, rather than repeatedly answer questions, as her workers frequently changed. The process of co-creation through storytelling opened up avenues for consciousness-raising and counter-storytelling among NDOA participants, combatting their own perceptions of themselves as “troubled,” “a problem,” or simply “bad” as a few of our participants shared, but rather to recognize themselves as unique, beautiful, and worthy.

Relationship/rapport-building is an important part of the interpretative research process, but is not without ethical tensions, particularly in the context of research within marginalized communities (Schmid et al., 2024). Researchers can become a part of people’s social network, even if it is for a short while. As noted by some participants, when a formal process is completed, this can be perceived as a loss, especially for those who experienced an affinity and connection with the interviewer. It was important for us that participants understood our role and relationship as researchers, including the boundaries of that role and how it differed from the role of their service providers. At the same time, we acknowledged that saying good-bye to people who come into our lives, even briefly, can be difficult (Huisman, 2008). One of our strategies in working through this was to ensure that participants maintained connection with their existing social supports, both at the conclusion of the research and whenever additional support was needed along the way. We also created space to talk about these endings, validating the emotional complexity of closure and allowing them to process this part of the experience.

Catalytic validity extended beyond participants to include others involved in the research as well (i.e., researchers, AG members, and support persons). One of the most poignant moments began with a former service provider who first introduced us to Tina. She acted as Tina’s support person during the interviews. Although she knew of Tina’s history, reading her story made her aware of how deeply Tina wished to be reunited with her children. Because of this, and in the context of Tina receiving a difficult health diagnosis, the service provider felt a renewed sense of commitment to finding her children. After several months of searching, she found Tina’s son who came to visit her. A chain-reaction ensued, and Tina’s daughters and brother were eventually located. Tina has since reunited with most of her long-lost family.

Given that we are still in the early phase of providing training, it is difficult to evaluate the impact of our social change efforts, though we can report here that we are working together on policy briefs, presentations to community groups and public sector service providers, and using findings to support the advocacy work of local organizations.

Pitfalls

Accounting and preparing for pitfalls can be part of a learning process. Our first pitfall was related to the life/care line drawings, which proved to be more complex or time-consuming for participants than we expected. Rather than drawing them on their own, many NDOA and all the carer participants chose to co-draw with the interviewer, or simply left the task to the research team, after which they edited and validated the lines. In hindsight, it would have been best to reserve a final session focused solely on the life/care line drawing and to develop a visual guide to clarify the process, an idea we only operationalized in our reflection toolkit after the fact. Still, most NDOA were actively engaged in co-construction, either by choosing pictures from magazines, or deciding what pictures the interviewer should draw, or coloring in pictures on the line. This reinforced the idea that participation within different parts of the research process was individual and unique, and that diverse possibilities should be integrated within the process.

The retelling of life stories also brought up feelings of loss and fear for the future among carers in ways they had not confronted before or were reticent to confront because of the absence of available options for advanced care planning. When needed, we provided referral support and followed up by telephone with participants who had struggled during the interview. In some cases, we helped a participant locate a needed resource using our pre-existing relationships with service providers within the health and social care service sector to leverage access. We acknowledge that, given some of the institutional and ideological barriers that carers often face within health and social care services, there is a need to further build community-based support for and by carers. Within the co-production of the narratives, we also worked to balance strengths and challenges in these stories to give witness to reciprocity, love, care, and commitment that were previously unaccounted for, minimized or pathologized by others.

Literacy sometimes meant participants could not easily read or access their own story, another challenge to inclusive and accessible research design. The visual components of the project helped to alleviate that issue and, in some cases, the interviewer took the time to read the story over 1–2 sessions so that the participant could fully engage in validation. “Inclusive” research design prioritizes identifying and adjusting processes and acknowledges that learning and transformation are a dynamic process. It would be valuable in future research to explore how other strategies could be employed to promote universal engagement, for example, the implementation of photovoice along with storytelling (Chinn & Balota, 2023; Labbé et al., 2021). The web as a medium for sharing findings also limited accessibility to non-readers, as well as among people with little access to computers, particularly among those residing in long-term care residences or psychiatric hospitals. Frequent unplanned housing transitions, a common theme in the stories of NDOA also made sustained engagement more challenging.

Given that our participants resided within specific geographic regions and that we interviewed people with intersecting marginalized social locations, we continuously reflected upon potential risks to confidentiality and anonymity. Though we were unable to fully resolve this issue, we attempted to navigate it by anchoring informed consent/assent throughout the project. From the beginning, we discussed what participation would involve, emphasizing that participants could decide at any time whether they wanted to continue, or if they wanted to set boundaries in how, when, and where stories, quotes or parts of their stories were shared. We also engaged with literature within the disability community (Carlson, 2013) and beyond (Saunders et al., 2015) wherein debates about anonymity are foregrounded and attention placed on how the identities and voices of participants have been historically dismissed and/or depersonalized in research (Rice et al., 2018). We acknowledge that these ethical tensions between requiring anonymity (a research ethics board regulation) and enacting “transformative” disability justice principles of data ownership represented a pitfall in our work. Though we say that participants “own” their stories, the use of pseudonyms limits their potential for authorship claims beyond the individual level. Upon reflection, we believe that in avoiding the responsibility to question these boundaries with the institutional research ethics board, we compromised the “transformative” potential of our research. Still, it remained essential that participants were continuously engaged in the discussion around the sharing and dissemination of their story.

As with previous research using the intersectional life story narrative, the issue of balancing between attending to strengths of identity and pride while naming oppression was a source of ongoing tension, especially given how prominent oppression is in the life course trajectories of NDOA and their carers. Ensuring that both strengths and challenges are reported in every product and staying focused on speaking to resilience and resistance as a central tenet of the ILCP helped us to stay grounded in a way that validated and acknowledged the incredible agency and voice of our participants. Still, it was a challenge for researchers to bracket our desire to emphasize system problems in order to make substantial room to honor NDOA participants’ strengths (i.e., activities and interests in which they felt pride and purpose).

A common tension within critical research is how the results of a study are translated into tangible outcomes for the community. Given our commitment to community-action, we were also preoccupied with how the narrative themes could be used to meaningfully impact the lives of NDOA and carers. We wanted the findings to be utilized to improve service provision based on the realities of the community and build intersectional policies. These discussions were generated within our AG and research team. We identified the importance of engagement and alliance-building with advocacy groups and activist community organizations to meet our goals in partnership. Together, we explored knowledge mobilization initiatives that would be accessible to members of the community and could be used to further disability justice for and with NDOA and their carers. We continue to navigate through how our research can transform ideologies and policies that affect people’s everyday lives. This challenge is significant as building connections with key stakeholders can be elusive and time-limited given the current policy environment of centralization and austerity, which has resulted in increased rates of burnout among service providers, particularly in the context of COVID-19 (Teixeira et al., 2022).

Sustaining engagement with NDOA members of the AG was another area of concern. From the beginning, we asked the two NDOA members how they would like to contribute and share their perspectives within the project. They identified individual meetings and short accessible written summaries as strategies that worked best for them. Though we implemented these strategies, we reflected upon the “inclusivity” of the AG meetings and considered other ways we could have navigated these terrains, such as by meeting in more informal or familiar settings and combining work with social time so as to get to know each other more personally in order to build trusting relationships beyond professional boundaries.

Concluding Thoughts

The true power of a personal narrative is the way in which it can illustrate a common experience while at the same time centering diversity. Stories are a powerful means of consciousness-raising, as one of the best ways to change someone’s mind is to move their heart. Still, the written word can be both powerful and limiting, particularly in contexts of disability, and economic and social exclusion. Our efforts to “popularize” our findings through performance, podcast, and art served to bridge that gap but there is more reflection, and work to do to maximize this potential.

As with all forms of anti-oppressive research, the process matters. Participatory action research (PAR) has been identified as the most transformational form of research with guidelines for embedding power-sharing and activism in all aspects of the research design and process (Lawson et al., 2015; Maiter et al., 2008). While not all research projects can commit to PAR design, PAR can still serve as a light post on which to build other forms of participatory and community-driven research. We purposefully use the term “moving towards” to emphasize this point. Though not “participatory,” our community-driven research on aging with neurodiversity still achieved some measure of catalytic validity through an application of disability justice principles. These included naming and confronting ableism and concomitant forms of oppression, centering intersectionality, operationalizing “nothing about us without us” through solidarity work, and pursuing emancipation through action (Berne et al., 2018). By naming “transformation” as a process rather than a destination, we open up avenues for building success into daily practices, particularly in confronting hegemonic structures and discourses. Conscientization is a core principle of catalytic validity that can be applied thoughtfully with participants, team members, and key stakeholders.

Keeping the four steps of the ILCP in mind can serve to help identify the transformational potential in research: (1) major life events, timing and the structural forces which shape these events, (i.e.,by mobilizing storytelling and counter-storytelling as an act of consciousness-raising and resistance); (2) linked lives (i.e., by building relational transformation through prolonged engagement, co-construction, open conversation, and art); (3) categories and processes of differentiation (i.e., by honoring people’s identities and combatting exclusionary practices of hyper/in/visibility); and (4) oppression, agency and resistance (i.e., by naming sources of strength, and creating opportunities to enact agency).

Recent attention to EDI in academic and governmental settings in Canada and elsewhere has led to the development of new requirements that researchers document how EDI is operationalized within their protocols. Still, moving beyond a performative checklist approach to fully account for ‘inclusion’ remains a tension among researchers. Critical disability and critical gerontology scholars and activists have much to contribute to the discussion about how to make “inclusion” meaningful for people with disabilities and older people—two communities who have faced, and continue to face, significant social exclusion. In the context of work about the intersections of aging and neurodiversity, the necessity of this reflection is paramount to redressing long histories and current realities of exposure to harm caused by research processes driven by biomedical discourses. Our intersectional life story narrative praxis aims to contribute to this critical reflection and calls for efforts to move beyond “inclusion” and towards “transformation.” By highlighting possibilities and pitfalls, we hope to both illuminate and ignite further debate on these issues. By grounding research praxis in both the core principles of disability justice and the ILCP steps, we believe that researchers can be better prepared to navigate challenges in order to reach for, and engage in, meaningful change-making.