Debility versus disability: what the system cannot acknowledge

My son Robin took to bed two weeks before March break.

He had been soldiering on through the aftermath of a school transfer the district assured us would help him, though his body told me otherwise from the first day he arrived.

I’ve seen that kind of shutdown before—at camp, at birthday parties, in classrooms where support is promised and then revoked.

The new program promised academic alignment, built for gifted asynchronous learners, and it intrigued me with its language of belonging and accommodation.

It felt like a retroactive sorting—a belated admission that Robin should have been placed in the ‘smart class’ all along, as if that classification could shield him from what the system had already taken. As if the right label could undo the harm.

At the same time, I was furious for the lost years and for my daughter.

Because while they plucked Robin from the ashes at the very last minute and deemed him gifted, I was simultaneously fighting to get my daughter into a classroom at all. She would have thrived at the new school—engaged, collaborative, and hungry to learn, with a delight in connection and intellectual challenge that felt made for the program’s promise.

But no such offer came for her. Apparently, you have to be male and discontent to be considered exceptional. 

Being the parent of neurodivergent twins continues to demand that I endure a constant stream of assumptions—about who deserves support, who gets seen, and who gets saved.

What they stole

The elementary school did damage. For years, they perseverated over social-emotional goals, holding Robin back from academic material he was hungry for, denying him access to the things he loved most. They continually withdrew the support he needed, until he begin to refuse support soldiering stoically ahead until he would melt down. He was warehoused.

Even in his lowest moments—when peers mocked his meltdowns, when support vanished mid-year, when no one stepped in while he flailed from overwhelm—he stayed tethered to that world because it was adjacent to belonging.

The new school, and the cost of rupture

When they moved him, that all collapsed.

He arrived in January to a new place, where no one knew his name or his story, where the walls bore no memory of what he had endured. The program may have looked better on paper, and perhaps it did offer opportunities for connection. But Robin had no bandwidth left to seek them out. Through the continual unmet needs he had weathered, his nervous system was too taxed to take the risk of trying again.

My son was so depleted that he couldn’t coast without that foundation; the scaffolding of connection—even when flawed, even when painful—remained critical because consistency was the only thing holding him together.

The staff had described the classroom as a place where many students chose to stay during lunch, where like-minded peers naturally connected, and where Robin might feel an instant sense of belonging.

Robin was coaxed to linger several times for lunch, but his sensory processing was already overwhelmed. He never joined peers to eat, like the school imagined. He wasn’t the kind of neurodivergent smart kid they had imagined, robust and productive. Robin always left the moment he could. He sought out the atrium—a vast, high-ceilinged space that most avoided because of its scale. He ate quietly, alone.

The fantasy of a fresh start

Once I realised what a mistake I had made in allowing this transition to happen, my immediate question was: what does the data say? When kids change schools mid-year due to rupture, does it ever work? Or was this just another step in a long pattern of strategic exclusion, with the district fully aware that Robin would likely never make it through the school year?

Masked exclusion

What kids like Robin need is not a new program or a clean slate or a better fit on paper. What he needed was for his elementary school to fucking function—for the adults in charge of his wellbeing to notice that he was breaking under their negligence and to respond with more than sympathy and delay.

There is a persistent and deeply ableist fantasy embedded in the idea of a ‘fresh start’—that this will soothe a child whose nervous system has been trained to expect betrayal, that unfamiliar spaces will repair what was fractured in familiar ones, and that distress itself is the problem to be eliminated rather than understood. In this fantasy, administrators centre the comfort of peers over the belonging of the child who signals too loudly that something is wrong. Robin did not need a reset; he needed someone to honour the truth of his suffering and offer safety where he already stood.

Gifted is doomed

Robin was diagnosed when he was six, but we had already held him back a year, knowing the system would punish his difference. The system treated that difference as something to overcome—an obstacle to success, not part of who he is.

His intelligence was never doubted, but his disability was dismissed because it made adults uncomfortable to hold both truths at once. They wanted a marcom story: look what he achieved, in spite of it. They needed him to be inspirational or invisible.

Capacity became the trapdoor. Every time he succeeded, they framed it as proof he didn’t need help. Every time he faltered, they treated it as if he wasn’t trying hard enough. Brilliance cancelled out suffering, and effort erased eligibility.

Worse than the forms and meetings and gatekeeping was the belief that support could be rationed. That a child who depends on adult regulation could be expected to function with half as much care and blamed when he fell apart. It’s like giving a child who cannot walk their wheelchair only on alternating days, then watching them crawl and accusing them of poor attitude.

Just a Parent

The demand was resilience without rest and recovery without repair.

Debility versus disability

Every time I think of the word debility, I cry—because it captures something no one wants to say aloud. It names the slow, grinding horror of watching your child be separated from their own sense of belonging. It describes the ache of watching a person disappear from within systems that continue to record their presence.

68 days absent: must have been a terrible cold.

Just a Parent

Learning the language of exclusion hurts—because once you understand it, you begin to see it everywhere. But it also offers power, because it gives shape to what was once silent; it gives me the vocabulary to name the harm we’ve endured.

In The Right to Maim: Debility, Capacity, Disability, Jasbir Puar draws a crucial distinction between disability—something often legible, accommodated, or medically sanctioned—and debility, which names the slow, grinding attrition of bodies and minds through structural neglect, chronic exposure, and bureaucratic abandonment. The sorting hat. Functioning labels. These hollow classifiers meant to signal who deserves help and who should learn to suffer in silence. Whether your pain is visible or buried. Whether your difference disturbs others or merely dissolves you.

I remember talking to a mother on the playground whose son was autistic and a runner—he required constant supervision, and she spoke of the staff with such reverence, such heartfelt relief, telling me how kind they were, how consistent, how the school had been a lifeline. She said she could never care for him alone. And I believed her. But I also felt, beneath her gratitude, the invisible contract—because his needs were urgent, unignorable, and externally coded as risk. His care was prioritised not because he was valued, but because he was seen.

Children like Robin—who speak fluently, who mask until they collapse, who do not explode so much as unravel—do not activate that same institutional reflex. Their distress does not fit the model of crisis, so their care is deferred until collapse. Their pain does not frighten anyone until it threatens decorum. And by the time their needs become legible, it’s too late to meet them without repair.

Robin had a diagnosis from the beginning, but it never seemed to count. His needs were only addressed when they disrupted someone else’s day, and his strengths were used against him as evidence that he required less. Every time he succeeded, they took it as proof he didn’t need help. Every time he faltered, they treated it as a failure of effort or attitude. And when he finally became too large, too upset, too dysregulated to manage with half-measures, they transferred him, to make him a small fish in a big pond. The system never had a plan to make him whole. It only had tools to manage his disappearance.

Rest as refusal

Robin’s retreat into bed was a refuge and an incantation for survival. His body insisted on boundaries after years of violation. He had spent months dragging himself through halls that erased him, masking his exhaustion, and surviving the violence of withheld care.

When March break ended and he stayed in bed, I began to see that four weeks of rest had started to unravel the conditioning that told him to show up no matter what. He woke when his body allowed. He moved only when he wanted. He stopped contorting himself into something tolerable.

We received a worried email from the school. His teacher seemed sincere, but I also suspect the district hopes he’ll return to avoid bad optics. Robin was no longer available to be extracted from—neither for inclusion funding, nor normative metrics of success.

Letting go of the story of tidy repair

Philosopher Kelly Oliver writes that ethical witnessing is not about recognition, proof, or inclusion into dominant narratives of personhood. It is not about rendering someone visible in ways that serve institutional legibility or social comfort.

Instead, witnessing begins in a position of humility—where the witness acknowledges the limits of their understanding, and the suffering subject is allowed to exist beyond explanation, outside performance. Ethical witnessing means receiving what the other gives, even when it comes in the form of silence, refusal, or collapse.

In Oliver’s framework, subjectivity is not earned through rational coherence or social utility—it is inherent, and the ethical demand is simply to remain in relation without trying to fix, translate, or erase. Robin’s rest was a kind of epistemic resistance. He did not make himself legible. He did not seek to be understood. He let the narrative fracture. And I stayed with him.

His refusal to return was not a failure to cope—it was a truth told in the only language still available to him. His body was the witness. His stillness was a sentence.

Pathological demand avoidance

Among families raising children with Pathological Demand Avoidance, I have found a scattered archive of timelines and predictions. Some families said their children found their way back after one year of sanctuary. Others said two. A few said five. And some said the reclamation never came because the system had demanded too much.

I began by reading the hopeful ones—the ones where the child found joy again, or reclaimed play, or made a friend who did not ask them to be anyone but who they were—and I read them hungrily, clinging to each detail like a lifeline braided from story.

I saved the devastating ones for when I had the strength to carry their weight.

And now, as I stand inside the liminal space between collapse and emergence, I realise I do not yet know where Robin’s name will be written on that long and painful spectrum of timelines and outlooks.

I do not know whether this is recovery, or refusal, or something else entirely. At least the immediate harm has stopped. And for now, that fact shines like water in the desert. His father finally agrees, without caveat or delay, that we will no longer send him back to the institution that broke him.

Refusal as knowledge, refusal as protection

Pathological Demand Avoidance is a phrase so often misunderstood—flattened into stories of wilful children or oppositional personalities—when it is, in truth, a pattern of survival carved into the body and mind of those whose nervous systems perceive ordinary expectations as threat. These children do not refuse out of carelessness or rebellion. They refuse because the price of compliance exceeds what their bodies can pay. They resist because the shape of the demand carries with it the whole history of coercion.

Philosopher Kelly Oliver offers a framework for understanding this refusal. She writes that the demand for recognition—however well-intended—can become its own form of violence, especially when it places the burden of legibility on the one who suffers. Children with PDA often sense this burden in the air around them; they feel the hunger in adult eyes that want them to perform resilience, to express gratitude, to show progress, to appear healed. But these children, whose very bones remember betrayal, often resist being seen on anyone else’s terms. They reject the demand to be functional, palatable, or inspirational.

There is no such thing as a neutral demand

There is no neutral ground when the demand is to behave, to attend, to participate, to engage, to heal—when each of these words arrives in the body like a summons. There is no neutral demand when the expectation is to self-regulate inside systems that never offered safety. There is no neutral demand when the outcome is measured in adult comfort, when the reward is temporary belonging bought at the price of self-erasure.

Robin does not owe us a performance of healing. He does not need to convince us that he is better in order to be safe. He is already enough. He is already worthy. He has already endured more than any child should be asked to carry. And if all he ever does is breathe freely and laugh at cartoons and rest his body without surveillance, then that is a kind of triumph that no timeline can contain.

The weight of waiting

He grew pale from the weeks spent indoors. His acne flared with no sunlight and he scratched at it leaving sores. Sometimes when I watched him sleep—fragile, motionless, half-curled—I felt a grief so pure and primal that it reached back through time. I longed to scoop him up and hold him like an infant, to protect him with my whole body from the world that had shattered his peace.

I kept hoping, irrationally but earnestly, that he would take interest in something and move—that the spark of momentum would signal his return. And then I caught myself, chastened, holding the thought like a relic of the ableist bargain I had tried to refuse: the belief that productivity signals healing, that motion reveals worth, that animation redeems.

He required no gentle coaxing, no tiny rewards or therapeutic nudges toward compliance; he required sanctuary—uncomplicated, unstructured, and utterly without condition. I dropped every demand the world had scripted for him. His hair tangled into long, matts and his skin held the smell of unwashed days. He barely bathed, and I did not ask him to. I brought him meals in bed like when he was sick, because in every way that mattered, he was.

Naming what others refuse to see

He was debilitated, in the language my own mother once used when writing sick notes for me during high school episodes of collapse. She always chose her words with care, never diminishing what she witnessed. She would write that I had taken to bed, that I was debilitated or—her favourite term—decapacitated.

I remember my creepy PE teacher leering as he tried to decode that word, assuming it meant decapitated, as if my head had fallen off rather than my ability to comply. He misunderstood entirely, but the word stayed with me. It held a kind of legitimacy for something few are willing to name.

I watched my son lie there for months, his stillness pressing meaning into the fabric of every day. I mediated his collapse through the lens of my own, drawing from the wreckage of my past breakdowns to build a scaffolding of understanding—but in doing so, I began to project. I made a counselling appointment.

Grief, resentment, and the politics of exhaustion

There were moments I faltered—brief, raw, unspeakably human lapses into grief that bore the shape of resentment. I missed the camaraderie of shared labour. I missed the familiar rhythm of a child taking out the garbage or unloading the dishwasher. He stopped helping altogether, and I—already carrying the weight of our entire household—began to spiral into a quiet, isolating pity. A single mother holding the bodily functions of three people in her tired hands, three people whose independence refused to arrive on cue, whose developmental timelines had shattered the clock.

I felt the sting of regression, like when my children were mistreated at daycare and my son sat behind a couch for six months. This was another trauma lodged deep in the flesh of my nervous system, another rupture I had to metabolise alone while wondering whether we would find the far edge of this particular collapse.

I caught myself framing his stillness as pathology, and I rewrote it—clearly, deliberately—as the cost of surviving the public education system.

The truth he has always told

Things have always been harder for Robin. And now, in the stillness of his refusal, I see that he has always been telling the truth. He took to bed to save himself.

I remember how long it took him to learn to ride a two-wheeler. He clung to his balance bike until his knees came up past the handlebars, muscles straining, the movement no longer graceful. His core was so strong from compensating that he had an eight-pack, but he still loved the effortless coast, the feeling of gliding without resistance. We eventually got him a two-wheeler, but we couldn’t afford the kind of lightweight $2,000 bike he would have needed to make the transition easy. The one we gave him was heavy and clunky, and it took him years to fully succeed—maybe two full years after his sister. But when he finally rode it, it looked like he had always been flying.

Learning to ride a bike is culturally charged as a developmental milestone—often framed as proof of maturity, perseverance, or readiness. In dominant narratives, not riding becomes lack, and riding becomes triumph. But Robin’s refusal to ride—his insistence on the balance bike long after it ceased to serve him—was a form of bodily truth. He knew what his nervous system could handle. He knew what gliding offered that clunking could not.

That knowledge, held in his body, aligns precisely with Oliver’s insistence that we witness people on their own terms, without demanding translation into symbolic success. Robin’s slowness was not delay. It was truth.

He’s still in bed

Achille Mbembe calls this Necropolitics: the use of policy, delay, and institutional friction to determine which lives are allowed to flourish and which are slowly abandoned.

What Robin endured wasn’t a failure of support—it was what Achille Mbembe would recognise as the slow violence of state-sanctioned abandonment.

Necropolitics is not only about who dies, but about who is permitted to deteriorate without intervention, whose life is allowed to become increasingly unlivable under the guise of administrative delay.

Robin was made to disappear without ever being declared gone.

The system functioned exactly as it was designed—efficient at withholding care, fluent in bureaucratic delay, and hostile to the child who refuses to recover on schedule.

In that design, children like him are rendered ungrievable.

We escaped—but the cost followed us home. Sometimes I imagine invisible threads stretching back through time, each one a tether to the moment his nervous system fractured under pressure too great to bear. I picture him held in place by events that never resolved, as if the continuity of time itself ruptured and left part of him behind. But I also remind myself: that image might be mine, not his. He could be resting, recovering, even content inside his own knowing. I do not need to decode him. I only need to stay beside him.

What I carry is the cost, the silence, the shape of loss. What he carries may be something entirely his own.

End collective punishment in BC Schools

If you’ve read this far, then you understand something many in power still refuse to name: collective punishment is alive and well in British Columbia’s schools.

When children like Robin are deliberately abandoned—discarded because their support needs exceed what the system is willing to give, this is not benign neglect. It is engineered deterioration. The systematic removal of care damages nervous systems, erodes trust, and functionally guarantees that these children will experience overwhelming distress, sometimes expressed through violent meltdowns that serve as the only remaining language of protest.

When their bodies grow large enough to threaten the fragile comfort of those around them, they are pushed out with bureaucratic precision and framed as the problem they only embodied.

When entire groups of students—especially those with PDA—are isolated, excluded, or erased through formal processes that claim to serve their interests, we must tell the truth: that is not support. That is punishment guised as policy, exile dressed up as care.

If you believe every child deserves safety without condition and support without delay, I ask you to take one more step. Please sign the petition to end collective punishment in BC schools.

Your signature draws a line: no more punishing children for needing too much.