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, 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.

As Carly Findlay OAM recently put it

“Proximity to disability is not lived experience of disability”

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 myself, 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 a change advocacy role like mine:

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.

Nurturing Lived Expertise Talent

One of the challenges faced by lived expertise professionals is the destabilising impact on their sense of safety when encountering pushback that essentially questions their basic human rights. HRB reported on research that estimates 96% of DEI programs overlook disability; involving lived experience professionals is essential for meaningful inclusion.

To do this, there needs to be a pool of lived expertise professionals, those taking the step from sharing their experiences to working within and alongside organisations to make necessary changes. This capability needs to be nurtured.

As a Disability Leadership Institute member, I've found great solace and encouragement in the shared experiences of other members. Christina Ryan has created a beautifully safe community of disabled leaders. Many of us are working towards a brighter future, which means putting ourselves out there to educate others, expect change and, in turn, be constantly vulnerable.

"We are more disabled by the society we live in than by our bodies and diagnosis" - Stella Young

We are disabled by ignorance, by convenience and by able people speaking over us, about us and for us. It’s time to unlearn the medical model of disability, a model which undermines our autonomy and agency. Let us speak for ourselves and learn when it's time to be an upstander or advocate. Let us grow into lived expertise professionals with as few workplace injuries as possible.

Things you can do right now

Support lived experience and lived expertise professionals by being an ally in action, active listening, amplification, continuous education, challenging stereotypes, respecting autonomy, and promoting inclusive collaboration.

Being an upstander and advocate involves ongoing commitment and learning. Mostly unlearning. It's essential to be receptive to feedback, be open to evolving your understanding, and actively contribute to creating a more inclusive and accessible society.

In the next edition, I'll delve into upstander and advocate behaviours. By doing these things, you can take the burden of change off lived experience professionals, helping them develop their leadership skills and make positive changes.

Today's unlearning prompts

I asked ChatGPT to review this edition and develop some unlearning prompts.

Here are thought-provoking questions or challenges to encourage you to reconsider assumptions and expand your perspective.

1. Shifting from Charity to Inclusion: "Evaluate whether your disability inclusion efforts align to a charitable approach over genuine, meaningful inclusion."
2. Examining Decision-Making Processes: "Consider the influence of lived expertise professionals in recent organizational decisions and explore the added value their perspectives could bring."
3. Lived Experience Feedback Mechanisms: "Examine feedback channels for individuals with disabilities and request them to surface feedback."
4. Engaging Lived Experience Professionals: "Reflect on the frequency of engaging lived expertise professionals in decision-making and devise strategies for their proactive involvement."
5. Reviewing Diversity Programs: "Assess the inclusion of disability in your diversity programs and consider a more comprehensive approach for effectiveness."

Join the unlearning.

You can subscribe to learn with me. I'll share what I learn (and unlearn) about accessibility and disability. Together, we will consider the implications for impactful commercial and human outcomes.