Introduction

I start with a quick introduction of myself and this chapter, including its aims, scope and structure. I also provide a few words regarding the choice of language style that is to be applied throughout my writing.

I am currently employed as a Lived Experience Postdoctoral Fellow and Lecturer with the Centre for Disability Research and Policy (CDRP) at the University of Sydney, Australia. I have been with the Centre since 2014 when I first joined in an Honorary Postdoctoral Fellow role. I am now a member of the CDRP leadership team that sets strategic direction for the Centre and very much enjoy my employment in an accommodating and inclusive environment. Such an environment does not just magically appear. This welcoming and safe workplace culture has been championed by the Centre’s former Director and respected disability researcher and ally, Professor Jennifer Smith-Merry. An inclusive CDRP work environment stands in stark contrast to my prior work experiences in a policy role in the public service. It was in this inflexible government setting where my approved accommodations were inconsistently provided and where I would not openly disclose my neurodivergence for fear of discriminatory responses.

Having a formal medical diagnosis of obsessive-compulsive-disorder (OCD), I am neurodivergent. As a neurodivergent researcher, my lived experience-led and co-produced studies are designed to have positive and practical impacts on the lives of people with disability. These studies inform about redressing ableism (i.e. disability discrimination), together with practical and timely ways in which to advance the greater economic and social inclusion of people with disability. For example, a study that I led with Professor Jennifer Smith-Merry and Dr Kim Bulkeley on the policy issue of disability employment (specifically the under-representation of employees with lived experience of disability across Australian Disability Services) revealed that only half of these service organisations have at least one employee with disability and less than a quarter (24%) of organisations have a board member with disability (Mellifont et al., 2023). Highlighting the policy relevance and timeliness of our study, this research informed questioning at Public Hearing 32 of the Royal Commission into the Violence, Abuse, Neglect and Exploitation of people with disability held in Brisbane from 13 to 17 February 2023. More broadly, my research advocacy efforts support the disability inclusion mantra of ‘nothing about us without us’ to be widely applied across disability research and policy settings in Australia and elsewhere.

I now commence this chapter by addressing the thought-provoking question of who has lived experience of disability? My response to this question is to be informed by a critical examination of scholarly constructions of lived experience of disability, together with their complexities and practical implications. Next, I critically discuss the topic of representations of lived expertise in disability research and disability policy spaces. I then build an evidence-based case for including more people with lived experience of disability in codesigned and co-produced disability research and policymaking activities. I conclude my chapter by providing readers with a summary of avenues for future research relating to the intriguing question of ‘who has lived experience’?

Before this chapter gets underway, some quick words in relation to the disability language that is to be applied. Person-first language reflects the social model of disability where people are positioned before their disability (e.g. researcher with disability) (Disabled People’s Organisations Australia, 2022). The social model of disability and its support for a removal of barriers to social inclusion and the introduction of anti-discrimination law stands in contrast to the medical model and its medicalisation of people with lived experience of disability (Linton, 1998; Shakespeare, 2006). I purposefully use person-first language in the writing of this chapter. And while I choose to identify as neurodivergent rather than a person with OCD, I do not expect others to follow my personal choice. That is to say, I respect the rights and freedoms of others to choose how they prefer to identify.

Scholarly constructions of lived experience of disability, complexities and practical implications

Now, onto the question of who has lived experience of disability? Noting the complex nature of this question, I start by recognising that the language of lived experience is open to construction with no fixed meaning available (Byrne, 2013; Mellifont & Smith-Merry, 2021). In terms of lived experience of disability, it needs to be realised that everyone has lived experience but not everyone has lived experience of disability such as mental ill health (Morgan & Lawson, 2015; Smith, 2014). Disability allies are included among this latter group. Woodard et al. (2012) noted the importance of disability allies as faculty champions in the academy. Allies can thus lay claim to holding lived experience in providing valuable disability allyships, as expressed in educational settings in this instance. These experiences, however, do not extend to the personal challenges that many staff and students with disability experience on and off campus. Prominent among these challenges is ableism (i.e. disability discrimination) (Mellifont, 2023; Mellifont et al., 2019). While there exists a ‘uniqueness’ to an individual’s lived experience (Bennet et al., 2024, p. 9), shared insights can accompany direct experiences with dismissal and discounting (Byrne, 2017; Duvnjak et al., 2022). These are deep and intimate constructions that cannot be attained from simply reading about or observing discrimination as experienced by people with disability. Understanding can at times be difficult to put into words given the hurt, trauma and emotions involved. Gaps in understanding as well as misrepresentations of disability are readily found in the field of disability care. Carers can be said to have lived experience of caring for people with disability. However, if a carer does not have a disability, the same individual cannot justifiably or ethically lay claim to having lived experience of disability. Rieck et al. (2019) captured the complexities of a mother who provided care for a young adult with an intellectual disability. It needs to be recognised however that this particular individual’s lived experiences are different to the lived experiences of the person with intellectual disability for whom they care. Acknowledging the challenging and often times uncompensated work that many carers regularly carry out, respect for lived experience of disability is nevertheless needed to avoid misrepresentation. In this light, Chapman, Dixon, Kendall, et al. (2024, p. 2) explicitly stated in their methods ‘to ensure that the scoping literature review was grounded in the perspectives of lived experience of disability, the authorship team was formed to include a senior academic (EK) who is a family member of people with disability and has personal experience of a degenerative disabling health condition’. Helping to explain this intersectionality, this particular senior scholar is exposed not only to their lived experience of disability, but also to the experience of having family members with disability.

Closely aligning to queries about who has lived experience of disability is the question of who holds expertise? Lived expertise is defined as ‘knowledge, insights, understanding and wisdom gathered through lived experience’ (Sandhu, 2017, p. 5). So, while lived experience can be thought of as raw experiences, lived expertise is the knowledge that comes from reflecting on these experiences (Cataldo et al., 2021). Hence, accompanying lived experiences of disability such as mental ill health is a level of expertise that cannot otherwise be rightfully claimed, and this expertise along with the voices of people with disability need to be privileged, respected and valued (Byrne & Wykes, 2020; Chapman, Dixon, Ehrlich, et al., 2024; Mellifont, 2019). For instance, peer researchers’ insider expertise as gained through their lived experiences of homelessness successfully informed a study on this topic (Elliott et al., 2002; Massie et al., 2018). One does not have to search too far, however, to identify instances where respect for and representations of lived expertise is deficient or missing altogether. Gibbs (2022) made the observation that while many with lived experience are often the experts (e.g. academics, professionals), they rarely are positioned with the so-called experts who maintain power. While leaders without disability and their achievements in disability research and policy spaces need to be recognised and appreciated, it is the ethical leader without disability who is prepared to have power fairly redistributed with people who have relevant lived expertise and professional qualifications (or the capacity to develop professional expertise through training). It is noteworthy however that there exists no training in the world that can successfully provide lived expertise of disability to leaders without disability.

Remaining cognisant of the above-mentioned possibilities for misrepresentation and the protection of power bases, there are no set criteria that can be neatly applied to define what counts as lived experience of disability. Strong arguments are made against any direction or efforts towards the development of this criteria. Roennfeldt and Byrne (2020) posed the puzzling question of what counts as lived experience and what level or amount of lived experience is counted as ‘enough’? In addition to this questioning, any attempts to develop and rigidly apply criteria to lived experience of disability is to risk dismissing individual differences by forcing people to justify themselves (Voronka, 2016; Waddingham, 2021). Complicating matters even further, organisational recruiters have expressed biases with preferences voiced for less disordered forms of disability, with lived experience of mental illness falling outside of what is considered ‘a socially acceptable disability type’ in many cultures (Bakhshi et al., 2006, p. 25; Waddingham, 2021). Anderson and Bigby (2023) also questioned the transferability of lived experience on occasions where boards of organisations that support people with intellectual disabilities engage individuals with lived experiences of sensory or physical disabilities. It should therefore not be assumed that lived experience of a particular disability somehow magically transfers into the holding of expertise in another disability type.

With multiple and at times competing constructions of lived experience, disability policymakers need to apply caution when engaging in related lively discussions which can and do ensue. According to Jones et al. (2021), debates about terminology, including that of lived experience, can act as a distraction from the significant policy issues at hand and where people with disability continue to be under-represented in policy activities. Activities that are key to informing about the disability challenges to be raised in the first place and subsequently how these issues are to be addressed (or, aligning with the satisficing model and reflecting the realities of policymaking, reduced). I have witnessed occasions on social media where individuals attempt to position their constructions of lived experience of disability as correct and unquestionable, while at the same time publicly disrespecting and demeaning the constructions of others. Upon reading such negative social media commentary, I cannot help but think that this energy would be better served in collaborative efforts to expose and address the common enemy of people with disability; this enemy being ableism (i.e. disability discrimination).

So far in this chapter, I have referred to lived experience of disability which implies reflections on or descriptions of past experiences with disability. Studies have, however, made mention of living experience with disability to capture various present happenings (e.g. the masking of disability, experiences of bullying etc.) (Anika, 2021; Dillaway et al., 2022). This highlights the appropriateness of language capturing disability experiences happening in the now in addition to those experiences which have passed. This brings us to future tense and yet to be lived experiences of disability . With around 15% of the world’s population with lived experience of disability, this percentage is rising as people age (United Nations, 2024). ‘Yet to be’ lived experiences of disability is thus a growing policy issue for policymakers in Australia and elsewhere.

Appreciating the aforementioned complexities surrounding who has lived experience of disability as well as the timings of these experiences, freedom of choice in expressing lived experiences (e.g. experiences associated with madness, neurodivergence, survival, disorder, disability etc) is needed. Individuals can flexibly identify with one or more terms (e.g. mad, neurodivergent, survivor, disordered, person with disability) or other descriptors and at different times. From my perspective and as noted in my introduction, I identify as neurodivergent on the proviso that my approved accommodations are consistently in place. One such accommodation is that my presentations are performed in an asynchronous manner (i.e. these presentations are pre-recorded with questions taken on notice). Take this approved and reasonable accommodation away, as has happened on multiple occasions while employed in the public service, and I identify as a person with disability.

Representations of lived experience of disability in disability research and disability policy spaces

Representations of lived experience of disability in research about disability occurs at varying levels. At the highest level of inclusion is lived experience-led studies, with codesigned and co-produced research positioned at the preceding level (Bellingham et al., 2023). Researchers with lived experience of disability can therefore lead or colead studies and involve research team members with or without this experience. Within the research-led approach, the study aims, collection methods and all other decisions remain in the control of researchers with lived experience (Bennet et al., 2024). It is at this highest level of inclusion where researchers with lived experience are given opportunities to demonstrate their leadership and research skills across the entire disability research project. So, how might a lived experience led study play out in practice? Dr Annmaree Watharow and I co-led a study where we investigated our respective lived experiences as deafblind and neurodivergent (Watharow & Mellifont, 2024). To our knowledge, this was the world’s first qualitative, co-led study by a deafblind researcher and a neurodivergent researcher. The study was conducted in a respectful, flexible and cooperative way, allowing for our differing accommodation needs (e.g. large font size, written responses to interview questions) to be consistently met. Recognising the limitation of a small case study, our research was nevertheless practical, in that we successfully delivered a lived experience informed roadmap towards inclusive research design. This roadmap offered practical directions for accommodating deafblind and neurodivergent researchers and developing and supporting research career pathways (Watharow & Mellifont, 2024).

Also representing a strong level of involvement, codesigned or co-produced research is defined in terms of collaboratively constructing knowledge and engaging with stakeholders, including service users and carers (Greenhalgh et al., 2016; Halvorsrud et al., 2021; Voronka, 2016). Codesign involves forming collaborative partnerships and creatively working with people with various lived experiences (Borzenkova et al., 2023; Labattaglia, 2019). The literature, however, cautioned that co-production with researchers with lived experience can be inconsistently applied in practice (Durose et al., 2022; Smith et al., 2023). Legitimate codesigned and co-produced disability research therefore transcends empty rhetoric and ‘tick a box’ approaches to genuinely include researchers with lived experience of disability. Codesigned research is about inclusive action rather than repeated words about inclusion. I can recall attending an online conference where one of the presenters raised the important topic of codesign. However, codesign was repeated so many times over the course of their presentation that some online attendees started to play a game of buzzword bingo in the chat. Terms such as codesign and co-production should not be reduced to buzzwords that hold no practical application. Nor should they be flippantly thrown about in unconvincing attempts to appear inclusive of people with lived experience of disability. In contrast, co-production embraces the principle of authentically including people with lived experience in conducting studies as coresearchers while maintaining equitable partnerships throughout the research journey (Facer et al., 2016; Nectoux et al., 2023; Smith et al., 2023; Whitburn & Goodley, 2022).

Over the last 20 years in a shift towards social justice, co-production has brought together people with lived experience of disability into studies with disability researchers (Anderson, 2023; Gray, 2023). Recognising this progress, there continues to be a shortage of people with disability included in disability research following an undervaluing of lived expertise (Banas et al., 2019; Mellifont et al., 2019). With professional expertise at times elevated above lived experience expertise, academic structures and systems are at risk of dismissing expertise by experience (David et al., 2023; Mahboub et al., 2023). Inclusive academic structures value lived expertise while at the same time encouraging supportive and accommodating research settings. It is in these inclusive environments where people with lived experience of disability can be supported in developing their research skills (where such skills development is needed, recognising that many researchers with lived experience of disability are PhD qualified) and contribute to disability studies to their greatest capacity. In this way, people with lived experience of disability are not set up to fail as researchers or unfairly treated in tokenistic ways throughout the disability research process. Rather, they are authentically included in research teams, matched to roles and pay grades commensurate with their goals, skills and abilities and provided with accessible training opportunities to develop research expertise (again, wherever needed).

Researchers who continue to conduct studies about disability and who refuse to include researchers with lived experience of disability are opening themselves to questions about the quality of their studies. For instance, the inclusion of lived experience in disability research offers perspectives that are not available to teams lacking in this experience (e.g. perspectives about disability employment) (Fraser-Barbour et al., 2023). Disability research teams with no lived experience are also at risk of perpetuating negative disability stereotypes where a medical model-driven deficit focus of disability can dominate. Autistic researcher and professor Nick Walker cautioned about controversial and abusive conversion therapy techniques continuing to be carelessly published in academic journals (Walker & Raymaker, 2021; Yergeau, 2018). A need therefore exists to shift away from disability studies that feed discriminatory messages (e.g. people having to be cured of their neurodivergence). Supporting this shift, Smith-Merry et al. (2024) cautioned about the prospect of lived experience becoming only partially included in the research process (i.e. this experience not extending to stages of manuscript writing and scholarly publication). The exclusion of lived experience in these critical final stages of research risks ableist manuscript content being overlooked, particularly on occasions where lived experience is also absent among manuscript reviewers. Yet another pressing research question thus becomes, who has lived expertise among disability manuscript reviewers? Chief editors of disability journals are therefore challenged to ensure that lived experience of disability is represented among their reviewers.

I now move the discussion on to representations of lived experience of disability in disability policymaking. In accordance with the UNCRPD Article 4(3), government policy needs to be codesigned and include the voices of people with lived experience of disability (Löve et al., 2017; Nally et al., 2022). The inclusion of lived experience of disability in shaping disability policies and services is thus critical to the advancement of human rights and equity (Anderson & Bigby, 2023; Malbon et al., 2024). Rieger (2020) too called for disability policy, services and programmes to be codesigned with people with lived experience. The main goal of codesigned policy is to co-create tailored solutions to issues (e.g. housing insecurity/homelessness) by applying the expertise of individuals who have lived experiences with the issues under investigation (Constantine, 2023; Labattaglia et al., 2023; Meltzer et al., 2021; Robinson et al., 2024). Goldstraw (2021) too noted the importance of purposefully listening to the voices of people with lived experience in the making of policies that directly impact upon their lives. Despite the UN, scholarly and advocacy support for inclusive disability policymaking, significant forms of resistance persist. Power imbalances continue where government and political agents decide upon what policy content is informed through stakeholder consultations and without any accountability for their decisions (Löve, 2023). Furthermore, a greater representation of people with disability across the policy development process can reduce control and power for some, with marginalised groups advocating for their greater engagement in policy agenda setting and activities (Disability Advocacy Network Australia, 2012; Löve et al., 2017). Care is therefore needed in disability policymaking in Australia and elsewhere to avoid an under-representation of lived experience and ‘fake’ codesign. According to Mladenov (2023), this disingenuous form of policymaking attempts to legitimise an inequitable status quo through a refusal to redistribute power, with inequity maintained through various soft forms of power control (e.g. hiding information, speaking in policy jargon and nudging people to move in certain directions).

Building an evidence-based case for including more people with lived experience of disability in disability research and policymaking

Informed by the above discussion, the case for a greater inclusion of lived experience of disability in disability research and policymaking activities is a strong one. To begin with, including lived experience in research design enables the exploration of topics that are of particular relevance to disability communities (Strnadová et al., 2022). In addition to informing where the research is heading, the inclusion of lived experience researchers brings ‘insider knowledge’ that eludes researchers without disability (Mellifont et al., 2019; Watharow & Wayland, 2022). The value of having ready access to established, trusted and extensive disability networks should also not be dismissed or downplayed. For it is this lived experience of disability which can enable contact with study populations that might otherwise remain out of reach as well as helping to comprehend the important messages that study participants with disability are communicating (Biringer et al., 2016; Elliott et al., 2002).

Co-produced studies empower researchers with lived experience of disability (Lombard-Vance et al., 2023). Empowerment in terms of people with disability taking back power (or refusing to acknowledge illegitimately held power) is signified in many ways. For example, neurodivergent voices reflective of lived experience challenge studies which promote questionable ‘treatments’, including sensory desensitisation and early intervention by positioning these approaches as forms of abuse (Shaw et al., 2022). The neurodivergent voices of those who have lived experiences of these kinds of abusive treatments should never be silenced by those without these experiences (e.g. politicians, policymakers, carers, researchers or healthcare professionals who carry out these treatments and who might have vested financial interests in their unabated continuation).

Co-produced policy also empowers people with disability through a sharing of authority and the valuing of knowledge that comes from lived experience while practically applying this knowledge to inform disability policy (Martin et al., 2022; Smith, 2022). More people with lived experience of disability need to take power and be drivers of disability policy direction, both as policymakers and valued stakeholders. It is easy for governments to dismiss, gaslight and label stakeholders with lived experience of disability and who publicly criticise disability policy directions as scaremongers or ‘unstable’ conspiracy theorists. But these kinds of dismissals are ableist, in that they fail to give any real consideration to the possible validity of the concerns raised. Rather, the voices of people with lived experience of disability need to be heard in relation to complex policy issues and pragmatically acted upon through co-produced measures (Hoogendam, 2023; Patrick et al., 2022; Peters, 2023).

Genuinely inclusive and respectful disability policymaking is possible. Co-produced policy has been successfully applied across diverse fields, including healthcare access, disaster risk reduction for people with disability and disability employment (Bishop et al., 2023; Khayatzadeh-Mahani et al., 2020; Yamori, 2020). However, while these texts offer sound examples of inclusive policymaking, it would be naïve to assume that co-produced disability policy is the norm rather than the exception.

A summary of avenues for future research relating to the question of ‘who has lived experience of disability’?

To follow is a list of research topics relating to the question of ‘who has lived experience of disability’? (see Box 1). This includes topics that endeavour to inform ways of decreasing misrepresentations of lived experience of disability and increasing representations of people with disability in disability research and policymaking teams. Aligning with messages of inclusion (made throughout this chapter), such future research needs to be either lived experience-led by or codesigned with people with disability.

Conclusion

In this chapter, I have critically discussed scholarly constructions of lived experience of disability as well as their complexities and practical implications. I have also critically examined who has lived experience in disability research and disability policy spaces. Last, I have revealed an evidence-based case for including more people with lived experience of disability in disability research and policymaking activities. I hope this chapter has provided readers with much food for thought on the multifaceted, intriguing and complex question of who has lived experience of disability? Despite the complexities raised, three words remain crystal clear in my take-home message – ‘avoid fake representation’. So, if you are a carer without disability, do not misrepresent yourself as having lived experience of disability. If you are a leader in a disability research or policy space and do not have a disability, do not put yourself forward as having lived experience of disability. To do so is to not only mispresent yourself, but to also show disrespect towards the people who have this lived experience. Finally, I trust that I’ve offered some interesting research pathways related to the question of ‘who has lived experience of disability’? that once travelled, will inform a range of pressing disability policy issues.