You like people

There is a moment that Ben's mother Evelyn describes that has stayed with me since she first told me about it.

When Ben is overwhelmed by isolation — when the day has stretched too long without company, without purpose, without anyone to help or be with — he can reach a point of acute distress that expresses itself as self-harm. He bangs his head against hard surfaces. Walls. The edge of a dresser. A door frame. It is not gentle. It is serious enough that Evelyn keeps an American football helmet nearby, something she can try to slip onto his head when it happens, to prevent him from concussing himself.

While it is happening, he talks. He says the same thing over and over.

He is not confused. He is not out of control in the way that phrase usually implies. He is thirty-eight years old and he knows, with a clarity that most people spend their whole lives trying to find, exactly what has gone wrong. He is saying it out loud. He is saying it to the room, to himself, to whoever might be listening.

You like people.

There is one thing you need to know to understand this moment fully. Ben flips his pronouns — he says "you" when he means "I." It is one of the most consistent and distinctive things about how he communicates, and almost everyone who meets him gets it wrong at first. When Ben says "you like people," he is not talking about you. He is talking about himself. What he is saying, in the only grammatical form available to him, is: I like people. I need people. I have not had enough of them today, and it has brought me to this.

Ben has Smith-Magenis syndrome and is legally blind. He has lived with Evelyn in Brooklyn his entire life. For the last several years, he has had no day programme — the ones that existed filled up, the right one never materialised, the waiting lists are long and the spaces are few. So he is home, mostly with Evelyn, in an apartment on a street in a city full of people he cannot reach.

This is not a story about failure. It is a story about what happens at the intersection of an underfunded system and a person whose primary need — the deepest, most consistent thing about him — is to be around other people and to help them. The system does not have a box for that. It has boxes for medical appointments and documented behaviours and risk assessments. It does not have a box for he would rather fix a bathroom door with you than eat supper, and if you gave him that, he would be fine.

The community programmes that do exist — the city farms, the cafes, the shared workshops — are, as a social worker who joined one of Evelyn's calls put it, lurching from one financial year to the next. They never have enough money. They never have enough volunteers. They do something extraordinary on almost nothing, and they keep almost not existing.

Ben would flourish in one. He cannot get to one without someone to go with him, and the one-to-one support that would make that possible is almost impossible to obtain. He has a care manager. She has been focused, Evelyn says, on finding him a residential placement, which is necessary and important. But Evelyn has told her repeatedly: it is not healthy for Ben to be home forty-eight hours a day with his mother as his only companion. That message has not moved the needle.

So Ben gets up at five in the morning and plays on his iPad until Evelyn wakes up at nine. Four hours, alone with a screen, in a world that would light up if he could be in it.

The self-harm, and the self-talk that accompanies it, is not something a care plan would ever record. It is not the kind of thing that comes up in an OPWDD assessment. It is the kind of thing that only someone who has watched and loved him for thirty-eight years would know, and understand, and be able to interpret correctly.

Before we go further, something important: Ben also has a way of holding his hands up by his head, looking down closely, that can alarm people who don't know him. That is not distress. That is joy — excitement, delight, full engagement with whatever is in front of him. These two things look nothing alike to Evelyn, but to a stranger they can both seem alarming. A new carer needs to know the difference.

The self-harm is different. It is real, it is serious, and it has patterns.

What Evelyn has learned over thirty-eight years is that the self-harm does not come from nowhere. It builds. It accumulates from unmet needs. When Ben has had his time out in the world — when he has seen people, helped with something, been part of things, received and given the physical warmth he thrives on — he is okay. When those things are consistently absent, the distress compounds. The iPad for four hours. Another day without a programme. Another afternoon at home. Eventually, the need overflows.

The football helmet by the door is Evelyn's way of protecting him when it does. But the deeper protection — the one that matters more — is understanding what fills him up before he reaches that point. Not managing the crisis. Preventing it.

A new carer, encountering the self-harm for the first time, would be frightened. They might reach for an incident report, a phone call to a supervisor, a new protocol. All of those things might be appropriate. But none of them address the underlying truth, which is that Ben is telling you, clearly and precisely, what has gone wrong. He is giving you the diagnosis himself. You have not given me enough of what I need. I like people. I need people. This is what happens when I don't have them.

If you know what it means, you know what to do. You find a way to get him around people. You call someone. You take him somewhere. You make a project he can be part of. You give him a job, a task, a reason to be alongside someone. The distress recedes. Not because you have treated a symptom but because you have addressed the cause.

If you don't know what it means, you might try to calm him, redirect him, document the behaviour, adjust his medication. You might, without meaning to, do the worst thing — leave him more alone with his need.

This is the gap that Next of Kin is trying to close. Not the gap in funding, not the gap in staffing, not the gap in policy — those are real and important and far beyond the reach of any single tool. The gap it can close is this one: the distance between what a parent knows and what the next carer starts with.

Evelyn knows which signals mean joy and which mean distress. She knows the patterns that build toward crisis. She knows what fills Ben up and what leaves him empty. She knows that the football helmet exists and why, and she knows that the best outcome is the one where it stays on its shelf.

That knowledge took thirty-eight years to build. It is precise and irreplaceable. It is also, without some deliberate effort to preserve it, at serious risk of being lost.

What Ben is saying when he bangs his head and repeats those words is not a symptom to be managed. It is a diagnosis he has made about himself, delivered plainly, with full confidence in its accuracy. Translated from his grammar into ours: I like people.

He's right. He does. And somewhere out there, there are people who would like him right back — who would fill his days with exactly what he needs — if only they knew where to start.