Lived Expertise as a Profession
A Journey in Unlearning for Disability Advocacy
Welcome to Mostly Unlearning, a newsletter that amplifies accessibility and disability voices towards more impactful commercial and human outcomes.
In today's edition, I’ll break down the difference and tension between lived experience and lived expertise. In the next editions, I’ll outline the headwinds to developing lived expertise talent and suggest some positive upstander and advocate behaviours to try.
Going from a disabled person with lived experience to a lived expertise professional has itself been a journey of unlearning. No one beamed accessibility into my head when I acquired a disability. Certainly, no one did when I started working full-time in accessibility. Having a lived experience of disability gives me a sense of others' experiences but not the lived experience itself.
“Proximity to disability is not lived experience of disability” - Carly Findlay
Watching us, working alongside us or even living with us is often insufficient to know what we need or want. This can be a tension for well-meaning executives, digital leaders and people in DEI roles, tasked with leading change across a range of diverse characteristics, often without lived experience of disability. But it's the decisions these people make that have a ripple effect on the lives and experiences of people impacted by disability.
And they look to people like me, lived expertise professionals, to guide their decision-making for good, mutually beneficial outcomes.
I was first introduced to the idea of lived expertise by El Gibbs. In their article "Lived Expertise Means Experts", El explores the knowledge, power and reality of being a lived expertise professional.
So, What is Lived Experience and Lived Expertise?
The concepts of "lived experience" and "lived expertise" are often discussed in the context of disability and accessibility advocacy. While both terms emphasise personal experience, they have distinct nuances important in change advocacy roles.
Lived Experience
Definition: Lived experience refers to the direct, personal encounters and challenges that individuals face in their daily lives. It encompasses the first-hand knowledge gained through navigating various aspects of life, such as education, employment, social interactions, and healthcare while living with a disability.
Role in Advocacy: Lived experience is crucial in disability advocacy as it grounds discussions and policy considerations in the real-life situations and perspectives of individuals with disabilities. It helps create empathy, understanding, and awareness among those who may not share the same experiences.
At work: Lived experience is a form of qualitative feedback. It can be reactive (hey, this isn't good enough) or proactive (hey, we’d like your input on something before we make decisions). It’s predominantly a form of qualitative research, generally 1:1 interviews or small focus groups. Lived experience is not easily gained from quantitative surveys because of the inaccessibility of many online survey methods and the generalisation of this data collection model. However, surveys can collect nuggets worth exploring quantitatively.
Qualitative research, a professional skill, translates personal experiences into tangible insights for change. In the case of disability and accessibility lived experience, we translate deeply personal experiences, ours and our community's, into change programs with accountability for deliverables and outcomes.
This is called lived expertise. I am a lived expertise professional.
Lived Expertise
Definition: Lived expertise goes beyond the mere experience of living with a disability. It involves a deep understanding, analysis, and mastery of the challenges and issues faced by individuals with disabilities. Lived expertise arises from drawing connections to broader systemic issues and developing a comprehensive understanding of the complexities involved.
Role in Advocacy: Lived expertise is often considered an advanced engagement stage in disability advocacy. Advocates with lived expertise not only share their personal experiences but also contribute valuable insights, analysis, and strategies for creating positive change. They may become thought leaders, consultants, or advisors in areas related to disability rights, accessibility, and inclusion.
At work: Lived expertise is a job (and it should be paid). Translating lived experience into tangible business, organisational or policy insights, actions and programs of work. It takes the burden off the person with the disability to advocate for systemic change and ensures accuracy in translating the nuance of lived experience to action.
In the context of disability and accessibility advocacy, both lived experience and lived expertise are valued. Lived experience provides the authentic voice of those directly affected, while lived expertise elevates the conversation by incorporating a deeper understanding of the systemic barriers and potential solutions.
It's important to note that these terms are fluid and may be used interchangeably or with slight variations in different contexts. However, the core idea remains: acknowledging the unique perspective gained through personal experiences and recognising the additional insights and expertise that can be developed through thoughtful reflection and analysis.
Today's unlearning prompts
Here are thought-provoking questions or challenges to encourage you to reconsider assumptions and expand your perspective.
How do you experience the difference between lived experience and lived expertise?
Are you clear about which role others expect you to play?
Are you clear which role you’re expecting yourself to play?
Could you be in the process of shifting from lived experience to lived expertise?
For more workplace unlearning prompts, such as examining decision-making processes and engaging lived experience professionals, read the original edition on LinkedIn.
Join the unlearning.
You can subscribe to learn with me. I'll share what I learn (and unlearn) about accessibility, inclusion and disability. Together, we will consider the implications for impactful commercial and human outcomes.