Every year, as the International Day of Persons with Disabilities approaches, I feel that familiar mix of tenderness and urgency rising in me – tenderness because disabled people carry extraordinary wisdom and care into systems never designed for us, and urgency because our resilience has too often been misinterpreted as acceptance, as though quietly enduring a system’s failures is the same as being treated with respect. And nowhere is this contradiction more palpable than in healthcare.
For many of us, healthcare is where we have been most dismissed and most determined – where we’ve had to explain our bodies to people trained to understand them, repeat our pain in different ways until someone finally listened, and navigate structures that treated our lived knowledge as secondary simply because it didn’t align with traditional hierarchy. Yet despite doubt, dismissal, and exhaustion, we returned to those rooms, not because the system welcomed us, but because our survival required persistence. That persistence, often unrecognised, is activism in its most human form.
My own disability journey has shown me repeatedly that the personal and the political are inseparable in healthcare. The times I was questioned, spoken over, or reduced to symptoms were not isolated events; they reflected a broader pattern in which disabled people’s expertise about our own bodies is treated as optional. But I have also experienced the opposite: the clinician who paused long enough to ask what I believed was happening, the nurse who acknowledged my embodied knowledge, the rare professional who understood that care is only ethical when it is collaborative. These moments didn’t erase the harm, but they illuminated what becomes possible when disabled people are treated as partners rather than problems to be managed.
Over the years, I’ve learned to trust the signals and rhythms my body communicates – knowledge that is intimate, precise, and deeply informed by lived experience. And once you trust yourself in a world hesitant to trust you, something shifts: you understand that your experience is not anecdotal or supplementary, but a legitimate form of expertise shaped by necessity and sharpened through survival. Expertise like that deserves influence, not dismissal.
The UN Convention on the Rights of Persons with Disabilities (CRPD) affirms our right to accessible, equitable healthcare and to meaningful participation in the decisions that shape our lives. Yet these rights often remain abstract, while the reality on the ground stays stubbornly unchanged. Participation becomes symbolic instead of structural; consultations are held, but power dynamics stay fixed; decision-makers ask for our input but rarely make room for our leadership. Rights without implementation become decoration. Rights without disabled leadership remain incomplete.
This is why disabled leadership in healthcare is not an optional enhancement – it is essential.
It should not feel radical to insist that disabled people guide conversations about the systems that shape our lives. What is radical, and deeply concerning, is how infrequently this expectation is realised. Too often “patient engagement” becomes a box-ticking exercise: one disabled person placed in a room of professionals, expected to represent millions, to recount trauma without compensation, to feel grateful simply for being included. But involvement without influence is not empowerment; it is extraction dressed as inclusion.
Healthcare improves – becomes safer, more compassionate, more effective – when disabled people help design policies, training, research frameworks, and care pathways. We know where the system fractures. We know what has been overlooked. We know what must change. This is not a weakness; it is a roadmap.
And it is precisely why I co-founded “The Patient Expert Academy": to transform the lived experience disabled people carry – the knowledge shaped through navigating barriers, advocating for ourselves, and learning our bodies in ways no textbook could teach – into recognised, compensated expertise that can reshape healthcare from within. The Academy exists so disabled people no longer have to fight to prove the value of our voices; it exists to ensure those voices hold structural weight.
Disabled people do not just deserve a voice in healthcare.
We deserve responsibility.
We deserve influence.
We deserve power.
And when healthcare systems finally accept this – not reluctantly, not symbolically, but with genuine intention – they become not only more just, but more capable of caring for everyone.
So on this International Day of Persons with Disabilities, I want to share that we are not waiting anymore; we are simply stepping into the space we have always deserved. And when disabled people lead, healthcare becomes more capable of seeing – and serving – the fullness of our humanity.
Susanna van Tonder is a Luxembourgish disability rights activist.
This is an opinion article. The views expressed belong to the author.
