There’s another photo: a faded Kodachrome color snapshot—1973. The furniture is different but almost all the adults in it are the same, only now with bigger hair and thick sideburns, in short skirts and turtlenecks and bell-bottoms, sitting on low-slung couches and on the floor around the kidney-shaped coffee table covered with ashtrays and Styrofoam coffee cups. Your mother—Louise Mellishman—who didn’t graduate from college and barely knows how to boil an egg but never takes no for an answer—will eventually become one of the leaders of the national parents’ movement fighting for the rights of people with developmental disabilities. But here, before she starts lobbying Congress, before all the pictures of her with governors and senators and families from all over the country, she’s just part of a local parents’ support and advocacy group, focused on the rights of their children—the ones who are institutionalized, and the ones still living at home—talking about methods of toilet training; about the merits of swimming-pool therapy; about how the less significantly impaired students at Fernald earn tokens for candy and watching Sesame Street and listening to records by learning simple skills in the classroom or by sweeping and emptying wastebaskets and straightening up the outdated and mismatched collection of donated toys in the playroom at the end of every day.

In this picture, Eleanor, then six and in a wheelchair, is in the center. When you look closely you find yourself next, and then you find Lydia. You’re on one side of the living room, and she’s on the other. Typical. You’re always separate; always there but not there; always on the periphery of the action that swirls around you but doesn’t include you. You’re four; Lydia is eight; the painful irony of your mother fighting for inclusion that doesn’t include you is still decades away. You’ve been called down from the top of the stairs where you were playing quietly together—Chutes and Ladders or Sorry! or some other board game—to grab a brownie or a Toll House cookie or whatever else someone has baked and brought to the meeting, before saying good night to everyone and going to bed. Like you’re the guests. When you appear, a few people smile and wave and give both of you little half hugs, but because you’re physically able and don’t need help, they quickly go back to their cigarettes and purple mimeographed agendas about upcoming fundraisers and raffles. They have work to do.

For years there will be parents in your living room talking about their sons and daughters—some toddlers; some already in their late teens and early twenties—eternal children, they’re called then. The Fernald families focus on vocational training, trips into the community, Christmas parties, Easter egg hunts. The other families, like yours, are concerned with community support, inclusion, and raising awareness. There is always something to plan, something to fundraise for, something to look forward to. Other times the conversation turns darker when parents ask, in whispers or in full-throated wails, what will become of their children after they die, who will look after them when they’re gone. The idea of leaving them alone in the world, at the mercy of a state institution without them there to check in on things, or to be looked after by older siblings or distant relatives, is unthinkable, and Louise is always the one to steer the discussion away from that grim abyss of a question when the lack of an easy and comforting answer is too much to bear.