Introduction
People with disabilities have long been ‘subjects of’ or ‘participants in’ research—their stories the data that informs other researchers’ work. However, research has emancipatory potential—the act of research itself is a type of power and the sharing of lived experience via research may be one mechanism to challenge oppression (Hodge 2008; Oliver 1992; Smith-Chandler & Swart 2014). In this project we used autoethnography as a method to reclaim power over our stories, acknowledge the value of our lived experiences and embrace subjectivity. In autoethnographic research, the researcher articulates and analyses their own stories and experiences as the data (Adams et al. 2015; Hughes & Pennington 2017). In particular, we embraced the purpose of autoethnography as a research method for giving voice to, and unifying, often unheard groups and individuals (Chang 2016).
There are two interrelated aims for this article. Firstly, we wanted to explore the potential of autoethnography as a method to facilitate lived experience and collaborative research. Secondly, we aimed to examine the ways in which our identities as people who self-describe as living with and without disabilities were shaped by, and shaped, our experiences of transitioning to identities that we self-describe as adult.
Transitions to adulthood are important to how we form our identity. Extant literature on disability and transitions to adulthood tends to problematise such transitions and focus on service- and parent-oriented perspectives (Carter et al. 2013; Hudson 2006; Leonard et al. 2016) or emphasise measurable milestones, such as housing and employment (Janus 2009; Wells et al. 2003). There has been some relevant work on relationships between gender, identity, adulthood and disability (Abbott & Carpenter 2014; Gibson et al. 2014) but, again, such research tends to be told from non-lived-experience researchers perspectives. Stories of what adulthood means in relation to diverse and complex experiences of disability have been largely missing from this body of literature. As a research team in which two of our members identify as having disabilities, we sought to address this gap in the literature using autoethnography via lived experience storytelling. In doing so, we found that various structures and relationships shaped what it meant for us to be recognised, and recognise ourselves, as adults. The lived experience of disability or otherwise was a significant social and individual factor in framing these transitions.
We acknowledge that dichotomous views of a person as being with or without disabilities are contested and may insufficiently consider the ways in which structural and social factors, including stigma, and politics, shape perceptions and experiences of disability (Anastasiou & Kauffman 2013; Grue 2013; Titchkosky 2020). We framed our analysis primarily within a social model of disability, while recognising the limitations of this model (Berghs 2019; Owens 2015; Thomas 2004). Our analysis of the ‘data’ (i.e., our stories) considered disability as a social construct, rather than an individual embodied or pathologised experience, even though we recognise that such individual critical models of disability can be important for challenging one-dimensional views of disability (Anastasiou & Kauffman 2013; Owens 2015). We have written from our self-identified positions as having or not having disabilities based on social experiences and relationships.
The purpose of this article is to reflect on the design of a collective approach to autoethnography to illustrate the usefulness of the method via an analysis of our transitions to adulthood. Given the purposefully subjective and revealing nature of autoethnographic methods, in the following section we reflexively position ourselves in this research space.
Author Reflexivity
As a research method that is premised upon the subjectivity of the researcher and one in which our own lived experiences are the data, researcher reflexivity was embedded throughout the process. Researcher reflexivity is a process of recognising, self-critiquing and revealing aspects of our identities and experiences that inform and influence research topics, processes and findings (Berger 2015). Reflexivity is considered particularly valuable in autoethnography (Lapadat 2017). Autoethnography is, in and of itself, a form of reflexivity as a critical, subjective positioning of the researcher (Koopman et al. 2020).
As a starting point to this reflexive positioning, here we each offer some personal insights. We have grappled with the issues of disclosure, a recognised challenge among lived experience scholars (Brown & Boardman 2011; O’Toole 2013). There is value in disclosing our relationships to disability as a means to confronting ableism. However, this can sit in tension with violations of our right to privacy, exposure of perceived ‘differentness’ and a lack of safeguards against ableist discrimination (Brown & Boardman 2011; O’Toole 2013). In this article, we have only disclosed aspects of our identities that we deem relevant to our researcher lenses and feel comfortable sharing.
We are all Australian researchers.
Lauren: I am a researcher and woman with lived experience of disability. I have cerebral palsy which affects me physically. I have an extremely unsteady gait. I often need support workers to steady me by holding my arm while I walk. I lack dexterity. I require support in performing personal tasks such as bathing and dressing, and my speech is difficult to understand. As a strong proponent of the social model of disability, I adhere to the phrase ‘nothing about us without us’. Thus, I believe it is preferable for people with disability to be active contributors in research rather than being considered as passive participants. I have a passion for the voices of people with disability being heard. I am strongly influenced by a strength-based model and feminist view of disability.
Kate: I am a woman, a social science academic and a community development practitioner. I am exploring ways to better integrate and value lived experiences of all types into teaching, research and practise. I live with a complex mental illness that I haven’t talked about much in my professional life. I don’t consider my mental illness ‘disabling’ because it has not significantly restricted my access to employment or education or impeded my independence. That’s largely because of a range of privileges, not because I’ve done anything extraordinary. I consider that the lived experience of disability is a strengths-based and powerful identity that I am not qualified to claim.
Shaylie: I am a lived experience researcher with disability. I am also a woman and a part of the LGBTQA plus community. Being a lived experience researcher means you are a researcher, but you’re also utilising your lived experience as a necessary tool. You’re paving the way forward for active citizenship and partnership between academia and lived experience and the recognition that we are more than something to be studied. That is why I have done this research, because I strongly believe in the phrase ‘nothing about us without us’. It is strongly embedded in my identity, and it is my belief that we can adhere to that more meaningfully together.
Background
In this section we provide an overview of the literature that informed both parts of our research—the exploration of collaborative autoethnography as a method for lived experience research and analysis of power and identity in transitions to adulthood.
Disability and autoethnography
There have long been debates about tensions between the ‘researcher’ and the ‘researched’ and the researcher as ‘insider’ and/or ‘outsider’ (Beals et al. 2020; Raheim et al. 2016). Wilkinson and Kitzinger (2013) described autoethnography as a means of maximising the researcher’s insider position. Pike (1967) popularised the concepts of the researcher as ‘emic’ (looking from within) and ‘etic’ (observing from the outside). Beals et al. (2020) built upon this by exploring contested spaces in which researchers navigate personal and academic spaces. They suggested that researchers are ‘…edge and margin navigators who locate the gaps and trace the moving and movable margins so that their voices not only can be heard in the center but also have access to the center’ (Beals, Kidman & Funaki 2020: 600).
As previously discussed, reflexive processes are conscious, critical and dynamic acts within such contested spaces (Enosh & Ben-Ari 2016). Decisions about the extent to and ways in which researchers situate themselves within their research are complicated. There are risks that by revealing too much of ourselves we may overstate our positions as ‘insiders’ or ‘outsiders’, and research environments may not offer the safe spaces necessary to care for ourselves in the wake of self-exposure (Rinaldi 2013). In recognition of this, we embedded strategies for care within our research process and established boundaries around what we would share.
Smith-Chandler and Swart (2014: 420) suggested that the ‘lens through which research is conceptualised has the power either to subjugate or to emancipate individual experience’. Historically, epistemological and methodological lenses have subjugated people with disabilities by privileging a non-disabled researcher as ‘expert’ and a person with disability as a research participant at best, or passive research subject at worst. Brown and Boardman (2011) identified that while there has been much discussion that the researcher holds more power than the research participant, researchers with disabilities and mental illnesses may also experience vulnerabilities and power imbalances during the research process. We sought to reposition imbalances by emphasising the power of people with disabilities as researchers.
Autoethnography has been posited as one means to articulate an insider’s voice and a research method by which people with disabilities in particular may take control of their own narratives (Kasnitz 2020; Lourens 2021; Richards 2008). Richards (2008: 1720) stated that, ‘One way of resisting objectification by others is by writing about oneself’. Kasnitz (2020) suggested that autoethnographic methods offer a shift towards an authentic model of disability studies and away from the more common study of people with disability.
We adopted a collaborative approach to autoethnography, in which we shared and analysed each other’s stories—insiders on our own stories and informed outsiders on each other’s stories. We sought to push against the historically dehumanising and silencing effects of being a research subject. We examined our various experiences of transitioning to adult identities as a revealing research topic via which we could test the emancipatory and collaborative potential of autoethnography.
Transitions to adulthood
Transitions to adulthood are social, cultural and economic processes that require nuanced conceptualisations of identity and citizenship (Lee 2014; Wood 2017; Wyn 2020). If disability is viewed through a social lens whereby social, cultural and economic marginalisation is disabling, then transitions to adulthood offer potential sites for exploring identity, power and social position. Studies on young people’s transitions to adulthood in relation to disability have tended to focus on measurable milestones such as employment, higher education, independent living, marrying and becoming parents. Such studies have found that people with disability experience multiple social barriers to reaching these milestones (Janus 2009; Pearson et al. 2020).
Transitions to adulthood are embedded with identity and ‘transformation of self’ (Riddell 2009: 84). It has been argued that measuring the transition to adulthood via milestones such as marriage or parenthood is ‘implicitly normative’, and is overly focused on consumptive factors such as income and home ownership (Valentine 2003: 49). Valentine (2003) suggested that personal characteristics, including self-esteem, are important considerations in understanding transitions to adulthood.
In our study we considered relational aspects of the transition to adulthood, where identities were formed in resistance to, or as reflections of, how we were viewed by others and ourselves. This is, ultimately, a study in subjectivity and reflexivity—considering us as subjects of our own stories of adulthood and critiquing our position as subjects in research.
Methods
Chang (2016) suggested three reasons that researchers might choose autoethnographic methods. Firstly, the autoethnographer gives voice to ‘subjugated knowledge’ (Denshire 2010: 530), offering otherwise silenced perspectives on human experiences. This was an important motivator in our selection of autoethnographic research methods. We purposively sought to use methods in which the researcher was an empowered storyteller with ownership of their subjectivity. Secondly, Chang (2016) considered that autoethnography was a means to build solidarity. Researchers and research audiences may connect via shared experiences of stigma and marginalisation. This, too, was an important factor in the design of our research methods. As researchers who are also involved in various forms of peer support and peer work—the sharing of lived experience for mutual benefit—connections to people with shared experiences were important to us (Davies & Butler 2022; Scott & Doughty 2012). We do, however, recognise that as researchers it is not our intention to represent the views of others (even those who may connect with our experiences) or to position our stories as anything other than our own. Thirdly, Chang (2016) identified that autoethnography has been used as a therapeutic and healing tool. This was not a motivating factor in our choice of method. As part of our reflexive processes, we considered the personal impacts of sharing particular stories and deliberately wrote about experiences where the retelling of the story would not cause us significant distress. For us, the purpose of autoethnography was neither therapeutic nor cathartic. It was intended to be revelatory, rigorous, meaningful and emancipatory.
Autoethnography is typically undertaken by an individual researcher examining their own stories or epiphanies as a means to make sense of cultural, social and political norms and experiences (Adams et al. 2015; Hughes & Pennington 2017). We recognised the value of autoethnography in giving voice and offering a rich understanding of complex social issues. However, we also recognised the benefits of collaborative research, which aligned with the peer models of engagement we have used in other aspects of our personal and professional lives (Davies & Butler 2022; Scott & Doughty 2012). Collaborative approaches to autoethnography may be able to offer multiple points of view and offer opportunities for redistribution of power via a collaborative narrative and analysis process (Denshire 2014; Roy & Uekusa 2020; Spies et al. 2021). Existing literature on collaborative autoethnography methods set out some of the steps that were important to our own research process, such as taking time to build the team relationship, setting boundaries and embedding an iterative process honouring the time needed to duly understand and analyse each other’s stories (Chang et al. 2016). Lapadat (2017) suggested that collective approaches to the analysis and interpretation of autoethnographies can enhance rigor and offer multi-dimensional views, which may also allow for scrutiny of systemic oppression by recognising shared experiences.
We drew on Lapadat’s (2017) recommendations for laying the foundations for effective and ethical collaborative autoethnography—scrutinising power differentials and establishing trusting relationships—and the work of Chang et al. (2016), which sets outs typologies and steps for collaborative autoethnography research projects. We adopted what Chang et al. (2016: 41) described as ‘full collaboration’, whereby each team member contributes to all stages of the research project concurrently.
In summary, our steps in the research process were:
Establish our principles and practises for collaboration, care (of ourselves and each other) and communication.
Identify and agree on a research question (criteria for this project were that the question would help us get to know each other, position ourselves as researchers and address a meaningful and under-researched topic).
Individually write a story related to the research question.
Locate a relevant piece of literature to inform critical thinking on the research topic.
Share our stories and literature.
Individually and then collaboratively identify themes from the stories.
Revisit our own stories and code thematically.
Allocate and write sections of the article.
Throughout these steps we maintained regular wellbeing check-ins and group meetings to unpack our data, interpretations and meaning. All decisions about methods and meaning were made together.
Collaborative autoethnography is an emerging and evolving research method and there is a dearth of examples of collaborative autoethnographic research. This has been attributed to the challenges of resourcing such methods within increasingly ‘unreflective and over-regulated’ research and practise environments (Denshire 2014: 844). We were not able to find any evidence of collaborative autoethnographic accounts of power and identity issues related to disability. There was, however, some work that exemplified individual autoethnography’s capacity as an accessible and viable method for giving voice to often unheard stories and facilitating critical analyses by people with disabilities themselves (Kasnitz 2020; Lourens 2021; Polczyk 2012; Richards 2008).
We knew each other, or knew of each other, through our involvement in a local peer-led disability organisation. As the starting point for our work together we had a face-to-face workshop where we discussed what we hoped to gain from working together and what it meant to us to be doing this research. We established our shared interests in exploring lived experience research methods, as well as our personal and systemic experiences of power. We then established a group protocol, where we came to consensus on the important principles of how we would work together, such as our preferred communication methods and how would set boundaries around what we were and were not comfortable to share. We established a ‘no apologies’ rule. We agreed to not apologize for the consequences of our complex and fluctuating lives, such as missing deadlines, taking time away from work, managing our mental health or needing to work in different ways, aligning with principles of ownership and emancipation embedded in this approach to autoethnography (Denshire 2014; Lapadat 2017; Roy & Uekusa 2020; Spies et al. 2021). We understood that we were working in a safe space and that we each had the experience, insight and skills to deal comfortably with the strong feelings that might arise for ourselves and each other during the research process.
We agreed that our first effort at sharing stories should be on a topic that was important to us, but that would not feel too confrontational. We brainstormed shared experiences and issues, until reaching consensus on our first writing prompt—‘When (if ever) did I realise I was a grown up?’ We set a guideline for word count, but no guidelines as to the form or content of our writing.
We individually wrote stories about our experiences and shared these via email. After taking time to read and consider our collection of stories we met face-to-face to work through a process of thematic analysis. We used a reflexive thematic analysis process, whereby we generated themes inductively based on our lived and professional experiences and continually reflected on our interpretations in relation to our reflexive positions (Braun & Clarke 2019). We took turns talking about the themes that stood out to us individually and then discussed the differences and similarities across our stories and interpretations, reaching consensus on two priority themes quite easily. After this workshop we took time to reflect individually on what our personal stories suggested about the themes and allocated sections of the thematic writing between us, co-editing the work to produce what would become the findings section of this article.
This article reports on our first attempt at applying a collaborative autoethnographic research process. We used this first attempt to test and refine a method while also building understandings of the complexities of our identities in relation to power and disability.
Ethical Considerations
Collaborative autoethnography offers strengths as an ethical research method, for its potential to be inclusive and provide a supportive team environment (Lapadat 2017). However, there are also particular ethical considerations, such as voluntary consent and anonymity for those people who feature in the narratives of the autoethnographers (Chang 2016). We adopted two approaches to the ethics of identifying others in our narratives—anonymising and changing details of others where possible; and openly discussing the narratives with those people identifiable due to their unique relationships to us.
In terms of the autoethnographers themselves, there may be ethical implications related to the emotional and mental toll when studying topics that are sensitive and/or connected to personal experiences (Kumar & Cavallaro 2018; Sherry 2013). Lapadat (2017: 599) asserted that ‘A supportive, trustworthy set of equally vulnerable colleagues can provide invaluable support’, and this collegial approach was one we considered vital to an ethical, trauma-informed and safe research process.
As part of this safe, collegial process we checked in regularly via email and shared updates on our wellbeing, with a brief description of how we were feeling and a score out of ten. We provided follow-up support in response to these check-ins via videoconferencing, email or in person. We are each experienced practitioners and peer workers and as such felt well-equipped to support each other and seek external support if needed. There was the option of a confidential university-provided counselling service if required.
There has been critique that institutional ethics reviews are often ineffective in capturing the nuanced and intricate ethical concerns of autoethnography (Lapadat 2017). Such formal processes may focus more on institutional risk and risk to participants, without recognition of the centrality of self-care for researchers. Whether or not institutional ethics approval is required for collaborative autoethnography tends to be contentious and inconsistent across institutions (Koopman et al. 2020; Lapadat 2017; Roy & Uekusa 2020). Autoethnography is an emerging area of consideration for our own institution’s ethics committee. In this case, it was determined that we did not require formal ethic approval for this project given the focus of the data on ourselves, but it is an area that we will continue to explore and interrogate. We hope that accounts of collaborative autoethnography such as this one will contribute to the ethical debates about this emerging method.
Findings
In this section, we offer insights into how our identities as people with and without disabilities relate to our own and others’ perceptions of us as adults. In doing so, we present the ways in which we have experienced power and powerlessness in the formation of these identities. In each following sub-section, we share excerpts from our individual written narratives, interspersed with our collective interpretations of those stories.
Independence, identity and acts of resistance
We consider that parts of our identity are external—what other people see. Other parts of our identity are internal—about what we personally feel and believe. There are times when we consciously seek to form our identities such that the outside reflects the inside. These are times when it becomes important to us that the way we are perceived by others reflects our personal values, politics, ethics and feelings.
For Lauren, moving in with her partner was an act of love, but one that was also about her establishing independence and autonomy. For Lauren, asserting herself as financially independent, for example, reflected that she not only wanted to be autonomous, but wanted to be recognised by others as autonomous.
Ten years ago I moved out from my family home with my partner. I had lived in a shared house years ago while studying at uni, however, this felt as though I was advancing towards independence…
After two months of house hunting, we finally secured a property which we both idolised. It was an older Federation house, with an abundance of character. I fell in love with it instantly, eager to put my touch on it…
Then I went to Centrelink [government department that manages social security in Australia]. I was required to notify them of my new living arrangements. Bliss was replaced by fear and loss of agency. They demanded I complete Centrelink forms. The questions were invasive. I was required to exchange my own and my partner’s financial details. I found this to be extremely confronting as our relationship was in its infancy. I had been in a bubble of pure ecstasy. However, this was burst by reality of government bureaucracy.
Two weeks later, I submitted the forms to Centrelink with my community worker. We met with a staff member who seemingly was devoid of empathy. As she perused my forms, she firmly informed me that my entire Disability Support Pension will be removed along with my concession card.
I could feel my entire body stiffen and began to feel a chill, which contrasted with the temperature in the room. Tears longed to be released from my eyes, however I stubbornly forced them not to flow down my cheeks. As my uneven gait moved me outside, I unashamedly begun to sob. Why was this happening? My partner and I didn’t share finances. Anger consumed every cell of my body. As a person with a disability, I’ve had times that I have felt on the peripheral of society and this moment amplified that feeling.
I couldn’t see how I could possibly live with my partner whilst maintaining my autonomy.
I tried to challenge Centrelink’s decision as I believed it was a gross injustice. The main response was ‘It’s the law’, but to me it seemed archaic.
Whilst cherishing the thought of living with my partner, I also wanted my financial independence.
For Shaylie, her independence was an act of resistance in relation to how she had been nurtured and parented. Independence was something she learned and fought for.
There have been many experiences where I have had to stop for a moment and reflect on the realisation that I feel like an adult. I say ‘reflection’ and ‘feeling’ because to me in those moments it felt like an epiphany, it felt like there was a sudden stop motion moment in time where everything that I had experienced up until that point made sense, and it integrated into the core of who I am as a person, everything had come together.
The very first moment was when I went grocery shopping for the first time when I moved out of home. I was with my housemate and we decided to go and shop together. Walking up to the shop there was a feeling of elation and thrill of not having supervision, and the shared understanding between my housemate and I that we were off on our own adventures together. Independence was a foreign concept to me as I had grown up with my family micromanaging every aspect of my development, living at home with a mother who insisted on doing everything for me because she infantilised me and saw me as incapable and a child, instilled a dual oscillation between truly not understanding or developing my own life skills, and the fear of trying and failing such life skills (like shopping) so I always had this feeling of being under developed in terms of my peer group. At the time I was undiagnosed with my intellectual and neurodevelopmental disabilities (Autism and ADHD) so looking back that compounded the situation.
In contrast, Kate had the privilege of having others assume that she was capable and autonomous. Kate resisted the label of adulthood because of what it might represent about her identity as a female, recognising societal expectations of women’s ‘adult’ responsibilities around parenthood.
I always imagined that becoming a mum would be the magical milestone when I became a ‘grown-up’. When I was pregnant I still didn’t feel like a grown-up. The responsibility of impending parenthood didn’t feel real, even though I was excited and looking forward to it. I rode my bike to work until I couldn’t fit my tummy in between the seat and the handlebars anymore. I didn’t buy much baby stuff. I kept making big plans about moving and having grand adventures. I often still felt like a lovesick teenager when I looked at my partner. I thought that grown-up feeling would kick in once I held my baby in my arms. It didn’t. When I held my son in my arms I had the feeling of being an imposter in a grown-up world. Somehow everyone around me thought that I was responsible enough to care for another human, but inside I felt like a kid who’d been given a new bike for their birthday that was way too big for them to ride. Anyway, it turns out that it didn’t matter whether I felt like a grown-up or not. Babies will need you in the way that they need you and I bumbled my way through. My kids are 10 and 12 now and most days I still feel like I’m bluffing and playing at being a mum! They tell me I’m old all the time, but I don’t believe them.
Transitions and the relationships that facilitate adulthood
We have experienced that our bonds and relationships change as we age. We shift from parents/caregivers/siblings being our primary relationships—generally positioned as ‘child’—towards relationships that we seek out, that is, partnerships. Our ideas of ourselves as adults are not just roles that we choose for ourselves. We evolve into adulthood because of how we form connections with other people such as partners, friends, children and colleagues. For Lauren, a marker of adulthood was fully embracing her relationship with her partner and their desire to share their lives. It was a physical transition from her family home to a home she shared with her partner, as well as an emotional transition about committing to a loving relationship. It was a moment marked with joy:
Finally moving into my own house with the man I love, I felt emancipated and independent. I was in a state of bliss for a few days.
It was also a moment marked by the need to reconcile acts of resistance with decisions about relationships and home.
So I was forced to make an adult decision; relinquish my ability to have control of my own finances in order to live with my partner, or live separate from him. I decided to take the leap of faith and share my life with my partner.
Shaylie’s shift towards adulthood was intertwined with her relationship with her mother and establishing herself as an independent person. Like Lauren, the physical transition to a new home was a significant marker of adulthood that was entwined with transition to an adult sense of identity. Her relationship with her housemate evolved into something quite different to her relationship with her mother.
In that moment though it felt like my housemate and I were both truly considered equals. We were both there together, and there were moments of bonding, and discussion and excitement over what to cook for our first meal together. To me that was the most exciting thing, that I had choice and control and freedom to be able to learn, eat and make the things that I wanted to.
For Kate her transition to adulthood was marked by her relationship with her children. She saw that they needed her to take on particular ‘adult’ responsibilities.
In the past two years I’ve been to the hospital emergency department three times with kids. … I feel a bit daunted walking in, but when I get in the door I’m all action. I’m confident in explaining to the nurses and doctors what’s wrong and assertive when I don’t feel like my little person is getting the care they need. I step up because someone else needs me. In that big, busy place that smells like disinfectant and where I’m reminded just how crappy life can be for people sometimes, I meet adulthood head on.
Discussion
In this section we unpack our shared interpretations of the narratives to consider what this means in relation to transitioning to adulthood as a person who does or does not identify as having disabilities. We interpret our stories in light of the extant literature on transitions to adulthood as achievement of milestones and the relative inequalities in access to such milestones for people with disabilities. We then discuss the learnings of this research in relation to the methods, offering insights into the value of collaborative autoethnography as a research method for the ownership of stories.
Transitions to adulthood
Our personal stories of transitions to adulthood illuminate the social experiences of identifying, or not identifying, as having disabilities, and the ways in which adult identities are forged as acts of resistance and relational processes.
Throughout the course of our research, we grappled with our discomfort with the dichotomous view of people with and without disabilities. This a complex and nuanced endeavour, and we have intentionally positioned ourselves in terms of how we personally relate to the identity of having or not having a disability. There are some merits in this dichotomy because there are structural and systemic aspects of the lived experience of disability that demand recognition, and for some people with disabilities claiming the language of ‘disability’ is an act of power and pride (Kasnitz 2020; Price 2013). However, the dichotomy is problematic, as people with disabilities are not a homogenous group and such language may oversimplify and inadequately recognise the disabling effects of society, culture and politics (Jenks 2019; McDermott & Varenne 1995). Despite our cautiousness with this dichotomy, we found it useful in terms of illustrating the ways that assumptions about adulthood play out differently and the ways in which we might need to fight for, or merely resign ourselves to, adulthood. Ultimately, we did find that in our personal experiences there were differences in the socially mediated experiences of adulthood that reflected our identities as having or not having disabilities.
While the literature suggests that conventional milestones are insufficient in capturing the diverse experiences of youth and adult identity (Riddell 2009; Valentine 2003) it is noteworthy that each of us intuitively referred to such a milestone—moving out of the family home or having children—when writing about our own adulthood. It suggests that these ‘normative’ cultural and social markers have meaning in terms of how we measure our own subjective transitions between identities (Valentine 2003). For example, Lauren and Shaylie both considered moving from the family home as an indicator of adulthood. In contrast, moving out of the family home was not a significant moment of realisation for Kate. By (unintentionally) telling our stories in relation to the milestone of living independently, we illustrated the barriers to accessing housing that are commonly experienced by people with disabilities in Australia (AIHW 2020), and reinforced existing evidence on the many social and structural obstacles put in front of people with disability (Janus 2009; Pearson et al. 2020).
In our narratives, the meanings we attributed to our new adult identities were diverse, but all were described in terms of our relationships to others and various societal roles ascribed to us. Kate’s act of resistance in relation to her self-identity as an adult woman may be understood, at least in part, in her avoidance of behavioural expectations of women’s roles in our society. As a woman without disabilities, Kate also had the advantage of people automatically assuming that she was an autonomous adult. In contrast, Lauren and Shaylie were not automatically perceived as independent and capable adults because of preconceptions about disability. They fought for their adult identities, resisting the limitations that institutions and individuals placed on them. When Lauren committed to a co-habitational relationship, and when Shaylie bonded with her housemate, they were actively contributing to their new relationships, and in the process achieving a sense of autonomy. Lauren described feelings of ‘emancipation’ and Shaylie feelings of ‘freedom’ associated with their new relationships. The ways in which explorations of adulthood were so embedded in the relationships we forged and our resistance to social expectations takes us, perhaps, a step beyond a social model of disability, towards what has been described as a ‘social relational’ model of disability (Owens 2015; Thomas 2004). According to Thomas (2004: 28), a social relational model critiques ‘disability as a quality and product of the social relationships between those with and those without impairment in society’. From a social relational perspective, experiences of disability are interconnected with power and oppression (Owens 2015; Thomas 2004). For Lauren and Shaylie, they pushed against oppressive structures and stereotypes to claim their adult identities, seeking out relationships of equality and enacting autonomy.
These lessons on the importance of relationality, autonomy and acts of resistance are also reflected in the methods of collaborative autoethnography and its emancipatory functions.
Collaborative autoethnography method
If disability is understood through the social relational lens, then collaborative autoethnography makes sense as a research method for exploring experiences of navigating social and structural identities. We wanted to have power over our stories and resist objectification via intentional subjectification (Kasnitz 2020; Lourens 2021; Richards 2008). We chose a collaborative approach to autoethnography in order to critique diverse narratives and express vulnerability in a safe space (Chang et al. 2016; Denshire 2014; Roy & Uekusa 2020; Spies et al. 2021). The method achieved these aims. We felt strong and in control of our own stories, largely because we had established, as a starting point, how we would communicate, care and make decisions. We were able to examine experiences of marginalisation (Chang 2016) and draw on principles of peer support—mutuality and respect—in this work (Davies & Butler 2022; Scott & Doughty 2012). In this spirit, we here offer some reflections on using collaborative autoethnography.
Lauren: This has been the most empowering research project I have participated in. As part of a collaborative team, self-care was given prominence. My research prospered in this supportive and nurturing environment and I felt that I was an active, valued contributor. The process prompted me to be self-reflective, deepening my learning of how ordinary activities can reveal underlying assumptions. Throughout this research project, our approach has been open and inclusive of life experiences rather than focused solely on disability issues or shaped by a medical model, which can lead to pathologising the needs of a person with disability. The process was empowering as it gave us an opportunity to be life-researchers, rather than disability researchers, and I had ownership over how my stories were produced and shared.
Kate: I agree—this was the most empowering research experience of my life. I’d tried autoethnographic writing on my own, but it was painful, and I’d felt a bit lost. However, I wanted to explore my own stories. I also felt that I owed it to all of those people who had shared their stories in interviews and focus groups with me during my research career to put myself in the position of research subject. Working with my two co-researchers in this study felt like an authentic collaboration and co-production. I felt safe and enjoyed the research process, even when it was hard.
Shaylie: This has been an incredible journey, and this type of project has never been more important for the concepts of belonging, disability and empowerment. We have been active participants in our own research from start to finish. I have learnt that the self-care component is fundamental. We are giving a lot of our lived experience and shaping it meaningfully but what has been such a protective factor is that we are doing it of our own volition and giving it our own voice. I’ve also learnt that we really have to be flexible and fluid when we discuss support structures. Luckily we had ownership of this project, and by delving into this with the rest of my team I have found pieces of myself, and pieces of the rest of the team that deserve recognition.
Conclusions
We have built an approach to collaborative autoethnography that is achievable within conventional academic settings and which, for us, facilitated a safe environment for reflexivity and sharing of stories. Key elements of this model were the foundations of trusting relationships, acceptance, self-care and care of each other, while holding ourselves and each other to account for the rigor of our research.
Conducting autoethnography prompted us to reveal parts of our personal lives and, rather than feeling vulnerable and exposed, we developed a deep sense of trust and camaraderie. This gave us the courage to be open. By sharing our different perspectives and experiences, novel themes emerged, and we discovered new insights into our identities as adults with and without disabilities.
Collaborative autoethnography is an emerging method that has not, as yet, been used widely to deconstruct experiences of identity in relation to disability. We have shown that the principles and practises of collaborative autoethnography align well with research that seeks to challenge conventional researcher/subject dynamics. Through this shared narrative method, we were able to extend our critical theoretical understanding from a ‘social’ to a ‘social relational’ understanding of disability identity.
We hope to see a wider uptake of this type of collaborative lived experience research. By doing this together we have imparted our experiences in a non-tokenistic way. Via reciprocity and care we have given power to our stories and nurtured each other’s individual experiences.
Competing Interests
The authors have no competing interests to declare.