He'd rather fix things than eat supper

Ben has a carer named Ryan. He's a nursing student at Columbia, and he's relatively new. One afternoon, Ben's bathroom door wouldn't stay shut. It kept swinging open. So Ryan and Ben analysed the problem together. Ben brought the right tools. They worked on it side by side. They fixed it.

This might sound like a small moment. It wasn't. Ben's mother will tell you that he would rather give any help he can to fix something with you than eat supper. He's not always able to do the fine motor work himself — but he wants to be included, he wants to be useful, and he will not let you forget a step. Fixing things, especially with men, is one of the deepest sources of purpose and joy in his life.

This isn't the kind of information that typically makes it into a medical file or a care plan — and that's understandable, because those documents serve a different purpose. But for a carer who has two hours with Ben on a rainy afternoon, knowing this one thing could transform the day from uncertain to wonderful.

At a concert recently, while surrounded by an orchestra playing Bernstein and Copeland, Ben stayed after the performance to talk to the tuba player, the trombone player, and the pianist. The music he loved was secondary to the people making it. But the first thing he talked about when he got home wasn't the music or the musicians — it was a blocked staircase he'd noticed in the church.

Ben notices what others miss. A crack in a window. A piece of gum on the floor. A tissue under a seat. He sees the world up close, through detail, and he is affronted by disorder. His mother was talking to a volunteer coordinator at the church and mentioned that Ben notices every piece of litter in New York City. The coordinator mentioned that volunteers help clean up after concerts. Ben's mother immediately saw the opportunity: here was someone who would love to help clean up, who would take the job seriously, and who would hold his teammates to account if they missed a spot.

This is the kind of knowledge that changes everything — and it doesn't come from a diagnostic manual. It comes from years of watching someone closely, with love and attention, and understanding what lights them up. A professional will draw on their training and experience to plan activities — and that expertise matters enormously. A parent adds something different: 38 years of watching this specific person and knowing what lights them up. Both kinds of knowledge are valuable. The challenge is that only one of them is routinely captured and passed on.

That's the space Next of Kin is trying to occupy — alongside the professional expertise, alongside the care plan, alongside everything the system already provides. We want to add the personal layer. The knowledge that comes from love and proximity and years of paying attention. Because that kind of knowledge is precious, and right now, it's the most likely to be lost.

What we're trying to build is a way to capture the second kind of knowledge — the personal, specific, lived kind — and make it available to carers in the moments when it matters. When Ryan showed up and fixed the bathroom door with Ben, he stumbled onto something beautiful by chance. The next carer might not. But if they could ask "what would Ben enjoy this afternoon?" and hear, in his mother's words, that he loves fixing things — that changes the whole afternoon.

Their diagnosis is well documented. Who they are — that's what we're trying to help preserve.