"the place in which we find ourselves is always one of negotiation..." (part 2)

I closed my last post with an edit—nothing too dramatic, just an omission, a soft reshaping of what I’d already written. And no, I won’t bother revisiting it. There’s no energy left in me for that. Perhaps it’s laziness, or maybe just the weariness of too much time spent rewriting, editing, trying to get it just right when the truth is, I can never quite capture everything I need to say. That’s the thing, isn’t it? The tighter you try to hold onto a thought, the more it slips through your fingers.

Let me distill it for you: Keeping it short and tidy? That’s not me. It never has been, not when it matters. And that particular post proved why. It was neither short nor cute—well, not by my standards—but short enough to feel like an insult to the weight of what I wanted to convey. I wrote about the closure of Autism Speaks Canada. The response bothered me, not just because it was about Autism Speaks, but because it stirred up a wave of commentary about dismantling other systems. I couldn’t help but lean into that, because I knew what it meant: the real conversation wasn’t just about the organization, but about the larger structures we’re all caught in.

But when you speak about something like Autism Speaks, you’re bound to invite assumptions. The inclusion of my own experiences—both positive and critical—led some to believe I was defending the organization, that somehow, by acknowledging its role in my life, I was giving it a free pass. That’s the trap of nuance in a world that demands binaries. It’s never as simple as “good” or “bad,” but people want that simplicity. And that’s what made me frustrated—not the responses, but my own mistake. I cut that post short, hoping to avoid a longer engagement, but in doing so, I left it incomplete.

And I get it—short posts are easier to digest. But what gets lost in that brevity? What gets buried when we don’t let our words sprawl out and speak the full complexity of the thing we’re grappling with? When I tried to trim my thoughts to fit into a neat little package, I missed something crucial: a conversation beyond Autism Speaks. A conversation about advocacy, about the people whose lives are quietly crushed under the weight of these systems we pretend are working. That’s not a mistake I intend to make again.

Autism Speaks isn’t an organization I can defend wholeheartedly, nor can I dismiss it entirely. My experiences with it weren’t all bad, but they weren’t good enough to make me want to see it survive. And here’s where it gets complicated: when I talk about my life, my family’s struggle, I’m often met with disbelief. How could anyone have benefited from an organization like that? And I get it—Autism Speaks is a monolith of ineffectiveness for so many. But I can’t erase my own truth just because it doesn’t fit the narrative that’s already been decided. I shouldn’t have to defend my right to exist in that tension. But in this world, that’s what I find myself doing: defending a past that wasn’t perfect but was all I had at the time. And that defense isn’t for Autism Speaks—it’s for my life, my choices, my family.

But when something as big as Autism Speaks can fall, we have to ask: what’s left in its wake? What else gets torn down, and who gets hurt in the process? And this is where I circle back to the closing of many organizations, of all sizes, but mostly local ones. I think of the people impacted by politicians voted in by their neighbors. I think about cuts to services…

It wasn’t just about one organization. It was a symbol, a reminder that these are the types of structures we’re constantly up against. When an institution falls, it’s rarely just that one thing. It’s the ripple effect—the people it leaves behind. And while some may cheer for the closing of a chapter like Autism Speaks, I see it differently. I see the absence of alternatives, the silence that follows, the feeling that something important has been stripped away without the foresight to replace it.

There’s a fundamental question we all need to ask: who decides what’s good for the collective? And how do we reconcile that with the lived experiences of individuals who are already struggling? I’m not talking just about Autism Speaks here. I’m talking about the countless organizations that close their doors every year, leaving families with fewer options, fewer resources. Insurance cuts, new policies, bureaucratic shifts—they all combine to make it harder for families to get the help they need.

And what of those families?

I watched, as a few voices cut through the noise. They spoke about their own struggles with insurance denials, with services being reduced, with the cruel indifference of a system that doesn’t care about their lives. And for a moment, it felt like a conversation I could enter. These were the voices that should have been central, the ones we should have been amplifying all along.

But here’s the thing: for all the battles we’ve fought, for all the progress we’ve made, there’s a growing chorus of voices that cheer when access is denied. I’ve seen it firsthand—people celebrating when a service that could’ve helped my family was taken away, as if that somehow made the world better. They didn’t care for a particular service, so no one should have it. But here’s the catch: they don’t build alternatives. They tear down without offering any vision of what comes next. And they don’t stop at one thing. Once the tearing starts, it’s relentless.

But they got what they wanted, right?

There are so many families whose voices are ignored, whose lives are dismissed. We’re told to dance around the feelings of those in power; to sanitize our experiences so they don’t threaten someone’s vision of advocacy. But when we’re denied the right to speak our truths, when we’re told that our struggles don’t matter, we’re left with nothing but the rubble of what’s been taken from us. And we can only ask, who decides what’s worth fighting for, and who gets to speak for those of us who are so often unheard?

Let me make this clear: I could shout until my throat bleeds that this post isn’t about Autism Speaks. Hell, I could tell you a thousand times that the closure is merely the spark that ignited a much broader, deeper conversation about advocacy and its failures. But I won’t. I won’t repeat myself again, because I’ve already given enough of myself to this—to you, to the world that constantly asks me to explain my life, my struggles, my thoughts, as if they need to be dissected and categorized. If you didn’t even read the previous post in its entirety and decided to sit with only the thoughts of a summary, you did yourself a disservice and insulted me in the process by ever attempting to check me on things that were mentioned in that post you didn’t read.

So, here’s the truth: You either get it, or you don’t. You either hear the weight of what I’m saying, or you don’t. And that’s not my problem anymore. There comes a time when I have to stop apologizing for the fact that I’ve already given more context than you deserve, and I have to turn away from the noise.

Enough. Enough of trying to make myself palatable, enough of wrapping my truth in a bow that makes it easy for people to stomach. Enough of waiting for your understanding. You either see it, or you don’t.