Nothing About Us Without Us

Unless It’s Nicotine When public health forgets its own most important principle

A post by Alex Wodak inspired me to write this.

It was simple. Direct. Almost obvious.

“Nothing about us without us.”

It is a phrase that has travelled across movements of disability rights, HIV activism, and drug policy reform, and it carries moral weight because it encodes a simple democratic principle: policies that shape people’s lives should not be made in isolation from the people who must live with them.

It is now widely accepted as a foundational principle in public health. Lived and living experience is not decorative. It is not an anecdotal garnish. It is a form of knowledge situated, embodied, often inconvenient, and increasingly recognised as essential to policy development.

And yet, in some areas of nicotine policy, that principle seems to dissolve.

When HIV emerged, the early response was paternalistic and moralistic. People living with HIV were stigmatised, spoken about rather than spoken with. That changed because activists demanded a seat at the table. Organisations like ACT UP did not politely request consultation; they insisted upon it. They challenged research protocols, trial designs, drug access pathways, and public messaging. They forced institutions to recognise that those most affected understood the stakes in ways no distant expert could.

Needle and syringe programs are considered harm reduction practice, were shaped by people who injected drugs and understood contamination risks, stigma, and real-world behaviour patterns long before policymakers did. What is now mainstream public health wisdom was once dismissed as reckless. It took lived experience to correct that.

The disability rights movement formalised the phrase “Nothing about us without us” as a rejection of technocratic benevolence, the idea that professionals, however well-intentioned, know best. People with disabilities argued that policies built without their input routinely misunderstood daily reality. Accessibility failures were not due to a lack of expertise. They were due to a lack of perspective.

Today, co-design and consultation with lived experience communities is considered best practice across health departments and research institutions. It is written into the funding criteria. It is cited in frameworks. It is invoked in strategic plans. In theory, it is uncontested.

But when the subject turns to nicotine, particularly tobacco harm reduction, the tone shifts.

Adults who quit smoking through vaping are often treated as curiosities at best, or as vectors of harm at worst. Their testimonies are described as anecdotal. Their motives are questioned. Their experiences are reframed as industry manipulation or personal bias rather than treated as data points that might illuminate policy consequences.

In Australia, hundreds of thousands of adults have used vaping to reduce or eliminate combustible tobacco use. Many had tried every approved cessation method. Many relapsed repeatedly, and many internalised decades of shame about smoking. For them, harm reduction was not theoretical. It was respiratory. It was cardiovascular. It was immediate.

Yet in policy debates, these voices are largely absent from the centre of discussion. Consultations occur, submissions are lodged, but the framing often feels predetermined. The “problem” is defined first. Lived experience is filtered later.

We are told that youth protection justifies sweeping restrictions. We are told that precaution must dominate proportionality. We are told discouraging uptake outweighs supporting exit. What we are rarely asked, but genuinely asked, is what actually helps adults stop smoking in real life, not in modelling assumptions.

There is a persistent false dichotomy in some public health discourse: lived experience is emotional; science is rational. But history tells a different story. The HIV movement accelerated scientific discovery because patients demanded urgency and access. Drug user advocacy improved overdose prevention strategies because those at risk understood contamination patterns before laboratories did. Disability activists improved built environment standards because they could identify barriers that engineers overlooked.

Lived experience does not replace science. It corrects it. It contextualises it. It identifies blind spots in policy design.

When thousands of adults consistently report that switching to non-combustible nicotine allowed them to stop smoking, dismissing those accounts outright is not a defence of science. It is a narrowing of what counts as evidence.

There is also a subtle imbalance in whose lived experience is treated as legitimate. Youth stories of experimentation or regret are amplified, rightly taken seriously, and woven into policy arguments. Adult stories of successful cessation are often scrutinised, caveated, or minimised.

If “Nothing about us without us” is truly a universal principle, it cannot be selectively applied to the experiences that reinforce a preferred narrative. Adults who smoked for decades and no longer do so because they switched to a lower-risk alternative are not peripheral stakeholders. They are central to any policy that restricts access to those alternatives.

Public health is not purely technical. It is democratic. Policies that reshape access to nicotine products affect millions of people, disproportionately those in lower socioeconomic groups and those with mental health challenges. When decisions are made without the structured, meaningful involvement of people who use nicotine, a democratic deficit emerges. Engagement becomes procedural. Consultation becomes symbolic.

There is psychological comfort in believing one is protecting the vulnerable. Youth protection is emotionally powerful. It mobilises urgency and headlines. But public health cannot be calibrated by emotion alone. It must weigh relative risks, unintended consequences, and substitution effects. If restricting lower-risk alternatives pushes some adults back to combustible smoking, that matters. If stigma silences people who might otherwise share successful quitting stories, that matters.

None of this requires abandoning precaution. It requires applying it proportionally and democratically.

We do not need a new framework. We already agreed on one. We said lived experience belongs at the policy table. We said co-design improves outcomes. We said inclusion is essential, not ornamental.

The real test of a principle is whether it holds when it becomes uncomfortable.

“Nothing about us without us” should apply to people living with HIV. To people who inject drugs. To people with disabilities. And to adults who use nicotine, especially those who have successfully moved away from the most lethal form of delivery.

If public health is confident in its evidence base, it should not fear dialogue. If it believes in harm reduction, it should listen to those who have reduced their harm. If it claims to centre lived experience, it must do so consistently.

Not selectively. Not strategically. Consistently.

The principle is already there.

The question is whether we are willing to honour it.