The Ben Story, and Why I Keep Coming Back to It

I’ve been rationing my AI news intake lately, the way you ration anything that’s genuinely bad for you but also genuinely interesting. Most days it’s the same churn: a new model benchmark, a funding round, someone on X declaring the singularity is either three weeks away or a scam cooked up by venture capitalists. I scroll past most of it with the same flat interest I give cricket scores from a series I’m not following.

Then every so often something lands differently, and this week it was a post on r/singularity from a guy whose brother has an ultra-rare condition called TUBB4A-related leukodystrophy. His brother, Ben, can no longer walk, talk, or track with his eyes. What he can still do is turn his head left and right. That’s it. That’s the whole interface his body gives him to the world now.

His brother used that one small motion, plus Anthropic’s Opus model, to build Ben games. A Mario Kart type racer. A 3D Angry Birds knockoff. A pet simulator. Built this week, for free, released open source so other families dealing with the same cruel disease have something to start from instead of nothing.

I sat with that for a while. I’ve got a teenage daughter who is, touch wood, healthy and loud and permanently attached to her phone, and I don’t spend a lot of time imagining what I’d do if she lost the use of her body but kept the rest of her intact. It’s not a place I want to go. But reading that thread, I could feel the shape of what it would mean to hand someone back even a sliver of play. Not therapy, not a medical breakthrough. A game. The ability to mess about and laugh at something dumb, which is a right most of us don’t think of as a right until it’s gone.

The comment thread did what these threads always do, split down the middle. One camp: this is why AI matters, screw the people obsessing over slop and copyright and dead-internet theory. Another, smaller but present: yeah, but AI slop is also real, and one nice story doesn’t cancel out the ocean of garbage flooding everything else. Both of those things are true and I’m not going to pretend otherwise. I spend plenty of my own working week fixing pipelines that exist purely to bolt an AI feature onto a product that didn’t need one, so someone in a board meeting can say the word “AI” and watch the share price twitch. That’s real. It’s also, genuinely, beside the point when you’re looking at footage of a bloke smiling because he’s driving a kart with a head tilt for the first time in a decade.

I don’t think you resolve that tension by picking a side. I think you just hold both: the technology is being used to generate an unbelievable amount of noise, and it is also, in specific hands, doing something that looks a lot like magic. Both were true of the internet in 1998. Both will probably be true of whatever comes after this.

What stuck with me more than the tech, honestly, was the throwaway line in the post: everything they built will probably be obsolete in a year, and they’re putting it out for free anyway. That’s not a business plan. That’s just someone deciding to be generous with something hard-won, because they know what it cost to get it and they don’t want another family to pay that cost from scratch. You don’t need a model card or a benchmark to recognise that as a good thing to do.

I don’t know where any of this ends up. The environmental cost of training these systems is real and I haven’t seen a satisfying answer to it. The economic disruption is real. The chance that all of this gets captured by three companies who couldn’t care less about Ben is real too. But every so often the discourse clears for a second and you get to see what the tool actually does in someone’s hands, rather than what it’s being sold as. That’s worth more to me than another thread about GPU shortages. Go well, Ben.