Every July, disabled people are handed the same script; be proud, be visible, celebrate how far we’ve come. There is truth in that invitation; I don’t want to spend this month pretending pride is a lie, but I want to ask a harder question underneath it, pride of what, exactly, and pride built where? For most of my life, the only place I was ever taught to locate the fight was inside my own body. The War We Are Trained To Fight Inside OurselvesDisabled people are handed a battlefield and told it’s the only one that exists; our own bodyminds. From the moment a diagnosis lands, we are enrolled in a project of self-management; manage your symptoms, manage your behaviour, manage your access needs so quietly that nobody has to notice you needed anything at all. The medical model doesn’t just describe disability as located in the individual, it insists that the individual is also where the solution has to be found. You are the problem and you are the fix. This is political, even when it’s dressed up as clinical. When distress, exhaustion, or crisis is filtered entirely through an individual diagnostic lens, every hard day becomes a personal failure of coping rather than evidence of a hostile environment. We internalise it, i know I did. I spent years treating my own nervous system like enemy territory, like something to be subdued rather than understood, because I had never once been offered a framework that let me look outward. That’s what I mean by turning the body into a warzone, our health becomes contested ground, our sociopolitical status becomes contested ground, and both wars get fought on the same terrain. Inside us, as though the rest of the world is simply the weather, an unchangeable backdrop to our private struggle. What The Ecosystemic Model Actually OffersThis is why the Ecosystemic Model Of Distress And Wellbeing, I developed over years of existing in hostile terrain, exists in direct opposition to that framing. The model doesn’t treat distress as a fault located in an individual nervous system, rather, it treats distress as an ecosystemic consequence; something produced at the intersection of a person and the environments, relationships, institutions, and power structures they are forced to move through. Think of an ecosystem in the literal sense. If a plant is dying, you don’t only interrogate the plant, you look at the soil, the light, the water table, what’s been sprayed on the field next door. Disabled distress works the same way, when we are anxious, burnt out, in crisis, or simply exhausted by existing, that is data about the ecosystem we are embedded in. The inaccessible workplace, the underfunded support system, the hostile welfare assessment, the constant low hum of being made to justify your own existence. The Ecosystemic Model doesn’t erase embodied experience. Pain is still pain, exhaustion is still exhaustion, but it refuses to let that embodied experience be the endpoint of the analysis. It insists we keep tracing the line outward, past the skin, into the structures that produced the conditions for that exhaustion in the first place. The Real Fight Is Outside The BodyThis is the part I need Disability Pride Month to actually reckon with; if distress is ecosystemic, then the fight for our wellbeing cannot be won inside our bodyminds. It was never a fair fight to begin with, because the terrain was rigged before we arrived on it. The real fight lives in inaccessible built environments that were designed as though disabled people are an edge case rather than a constant of human existence. It lives in employment structures that treat rest as moral weakness, and benefits systems that require disabled people to perform suffering convincingly enough to be believed, while punishing us the moment we look too capable. It lives in healthcare systems that pathologise distress instead of asking what produced it or in language itself; in who gets to narrate disabled experience, and whose account of that experience is treated as credible. Even the way we’re permitted to talk about our own lives is structured by all of this. Disabled people are so often only granted a public voice when we perform resilience, or when we perform tragedy convincing enough to justify charity. Both are extraction, both keep the conversation contained inside individual stories rather than allowing it to indict the systems producing those stories in the first place. Epistemic injustice doesn’t just decide what happens to us, it decides how we’re allowed to describe what happened. That’s the redirection this month needs. Not away from our bodies (our embodied experience is real and it matters) but past them, toward the actual site of the war. Building Forward, Not Retrofitting BackwardSo what does it mean to step toward the future from here? It means refusing a future that is simply the present with slightly better ramps. Accessibility retrofits matter, but they are not liberation, they are damage control on a structure that was never built with us in mind, acts of ecological conservation work. The future worth stepping toward is one where disabled existence is a design principle from the ground up, not an accommodation bolted on afterward. Where community, education, healthcare, and economic systems are built around the actual diversity of human bodyminds rather than an imagined neuronormative, able-bodied default. That’s a structural project, it has to be, because the problem was always structural. And it’s slow, non-linear work; which is exactly why I keep coming back to Tanya Adkin’s concept of lilipadding as a way of thinking about it. We don’t leap from a hostile ecosystem to a liberated one in a single bound. We move in small, sustainable steps across unstable ground, testing what holds, building community wherever we land. Lilipadding was never just a personal recovery framework. It’s also a model for collective, structural change, because neither individual healing nor systemic transformation happens in one clean, linear motion. Disability Pride, done properly, isn’t a celebration of endurance. Endurance is what a hostile ecosystem demands of us in the meantime., pride is the refusal to accept that the meantime is permanent. It’s the insistence that the fight was never ours to win alone, inside our own skin, it belongs out there, in the structures we are building, dismantling, and rebuilding together. The war was never in our bodies. It was always in the world that put us there. You're currently a free subscriber to NeuroHub Community Journal | Newsletter | Announcements. For the full experience, upgrade your subscription.
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