Shane Clifton
This blog post is based on the Evidence & Policy article, ‘Disability lived experience and expertise: recognising the expert contributions of people with disability’.
The disability rights movement was founded on the principle of ‘Nothing About Us Without Us’. This idea highlights the importance of including people with disability in decisions that affect them and recognises their expertise in shaping their own lives. While people with disability have too often been subject to controlling and dehumanising systems, as we explore in our recent study, there is now a growing understanding that disabled people should play key roles in designing, producing and leading disability healthcare, policy and research. The knowledge they bring is often called ‘lived experience’.
- Lived experience is transformative. When shared, it can shine a light on problems that were previously ignored and can drive social change.
- Lived experience is personal and embodied. It includes personal stories, medical histories, and interactions with services and systems. It’s the knowledge of ‘what it’s like’ to live with a disability that is not easily understood by anyone without a disability.
- Lived experience is a source of knowledge that has been pushed aside. It exposes the hidden issues of ableism, which involves both explicit and implicit discrimination toward people with disability. Ableism shapes individual interactions and social systems that marginalise and exclude disabled people.
The achievements of the disability rights movement are proof of the insight and power of lived experience. It has challenged and transformed many of the barriers that excluded people with disability from community life. Disabled people led efforts to make public transport, buildings and social spaces more accessible. They used their experience to change national and international laws, notably the establishment of the UN Convention on the Rights of Persons with Disability. They helped to reshape government policy and practice. While there is still a long way to go, people with disability lived experience have proven themselves to be powerful agents of social change.
The limits of lived experience
While there is increasing recognition of the need to listen to disabled voices, there are no clear rules on precisely how to do this. When disabled people are included in policy consultations, expert panels, research teams, and clinical workforces to provide lived experience perspectives, their ‘seat at the table’ is often uncertain, conditional, uncomfortable and lonely.
- Subjectivity and bias: The lived experiences of people with disability are often dismissed as being too subjective or emotional to be considered reliable evidence. This is a problem because non-disabled professionals also have biases, such as unconscious ableism, that can influence their perspectives.
- Tokenism: The inclusion of people with lived experience in research and policy is often not genuine. Organisations may selectively engage with individuals whose views align with their own, while ignoring more critical or challenging voices. This practice is a form of tokenism that devalues true participation.
- Exploitation: There is a tendency to focus on personal stories of suffering from people with disability. This can be disempowering and exploitative, as these narratives often elicit pity rather than recognise the strength, resilience and knowledge of the individuals. This focus on personal stories also means that non-disabled experts are often left to interpret and implement solutions, which overlooks the broader insights and expertise that people with disability possess.
- False separation of lived and professional expertise: There is a harmful assumption that a person cannot have both lived experience and professional expertise. This binary devalues the contributions of disabled people who also have professional qualifications. It reinforces power imbalances and relegates people with lived experience to the role of ‘informants’ while maintaining that “true” expertise belongs to non-disabled professionals.
Traditionally, the title of ‘expert’ is given to professionals like doctors, researchers and policymakers who have power through formal education and qualifications. These experts, who are usually non-disabled, control the systems that affect the lives of people with disability. The term ‘expertise’ is seen as more valuable than ‘experience’, especially in paid work and formal positions.
Disability lived expertise
To challenge this, we argue for the need to recognise disability lived expertise in policymaking. Lived experience and lived expertise are linked, but they are not the same. We define lived expertise as follows:
‘Disability lived expertise synthesises lived experience with a deep knowledge of the history, concepts, rights, and collective experiences of people with disability, the core values of the disabled community, and the advocacy skills needed to redesign and reshape the social environment to enable people with disability to flourish’.
Recognising the lived expertise of many people with disability ensures that their knowledge and skills can be placed front and centre. While a diversity of individual lived experiences offers invaluable insights for broad consultations and research, roles demanding strategic leadership, advocacy and systemic change draw on ‘disability lived expertise’. This expertise should have a vital seat at the table of services, policy and research shaping the lives and future of people with disability.derstanding about how best to utilise fellowships.
Image credit: iStock
Shane Clifton is an Associate Professor in the School of Health Science at the University of Sydney. He is also the Director of the Centre for Disability Research and Policy.
Read the original research in Evidence & Policy:
Clifton, S. Cooper, E. Bourke, J. Connor, S. Denton, S. Dominish, B. Gibellini, C. Gilroy, J. Hallahan, L. Jessep, S. Katterl, S. Mellifont, D. O’Brien, B. Farrant, F.Q. Watharow, A. & Wynn, R. (2025). Disability lived experience and expertise: recognising the expert contributions of people with disability. Evidence & Policy, DOI: 10.1332/17442648Y2025D000000060. OPEN ACCESS
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