Nothing About Us Without Us: The Power of Lived Experience in Meaningful Change

Image Description: "An aerial view of a diverse group of people forming a circle while holding hands, symbolising unity and inclusion. The group includes people with visible and invisible disabilities - some using mobility aids, others standing or sitting. The scene is set in a professional environment with warm lighting, using muted professional tones. The circular formation represents the concept of 'Nothing About Us Without Us' and collaborative decision-making. The image conveys strength, empowerment, and workplace inclusion through its composition and diverse representation."

In conversations about policy, workplace inclusion, healthcare, and social change, one phrase holds significant weight: Nothing About Us Without Us. At its core, this principle demands that those most affected by decisions are not just consulted but actively involved in shaping them. It is not enough for well-meaning individuals to make choices on behalf of others—true progress and lasting impact can only be achieved when lived experience is valued and embedded into the decision-making process.

The Danger of Exclusion

When decisions are made without the input of those they impact, the consequences can be damaging. Policies can miss the mark, workplace initiatives can feel performative rather than effective, and services meant to support communities can become inaccessible or even harmful. Exclusion results in assumptions, stereotypes, and systemic failures that fail to address real needs. Worse still, it can perpetuate inequality by maintaining power structures that silence marginalised voices.

The Value of Lived Experience

Lived experience brings an irreplaceable depth of understanding that no textbook, training session, or theoretical framework can replicate. People who have navigated the realities of a system—whether it’s the experience of disability, chronic illness, neurodivergence, poverty, or discrimination—have insights that are critical for identifying what works and what doesn’t. Their perspectives bridge the gap between intention and impact, ensuring that changes are not just well-meaning but genuinely effective.

For example, in healthcare, patient advocacy groups play a crucial role in improving services and policies. In the workplace, employees with disabilities or chronic illnesses can inform accessibility initiatives that go beyond compliance to create genuinely inclusive environments. In education, students from diverse backgrounds can help shape curricula that reflect real-world perspectives and lived realities.

Meaningful Inclusion for Lasting Impact

Ensuring that lived experience is central to decision-making requires more than token representation. It demands meaningful engagement, co-production, and shared power. This means:

• Listening with Intent – Moving beyond consultation to genuine collaboration, where affected individuals have a say in how decisions are shaped.

• Creating Safe Spaces for Voices to Be Heard – Ensuring that marginalised voices are not only invited into the room but are also given the platform, respect, and influence they deserve.

• Compensating and Valuing Contributions – Recognising lived experience as expertise, which means fair pay and acknowledgment for contributions rather than expecting unpaid emotional labour.

• Embedding Lived Experience into Structures – Making inclusion a permanent part of decision-making processes rather than a one-off effort.

The Call to Action

The principle of Nothing About Us Without Us is not just an ethical stance—it’s a necessity for meaningful, effective, and lasting change. Whether in policy, workplaces, or social initiatives, those who are impacted must have a seat at the table. Without their voices, we risk creating solutions that fail those who need them most.

True progress happens when those with lived experience are not just included but empowered, their insights not just heard but acted upon. The challenge for those in positions of influence is clear: Will you create change for people, or will you create change with them?