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THERE ARE PEOPLE in the world who change imaginations. You can find them in the most unexpected places. And right now, in the seemingly sleepy and mundane precincts of housing for the elderly, they are cropping up all over. In eastern Massachusetts alone, I came across almost more than I could visit. I spent a couple mornings with the founders and members of Beacon Hill Villages, a kind of community cooperative in several neighborhoods of Boston dedicated to organizing affordable services—everything from plumbing repair to laundry—in order to help the elderly stay in their homes. I talked to people running assisted living homes who, against every obstacle, had stuck with the fundamental ideas Keren Wilson had planted. I’ve never encountered people more determined, more imaginative, and more inspiring. It depresses me to imagine how differently Alice Hobson’s last years would have been if she’d been able to meet one of them—if she’d had a NewBridge, an Eden Alternative, a Peter Sanborn Place, or somewhere like them to turn to. With any of them, Alice would have had the chance to continue to be who she was despite her creeping infirmities—“to really live,” as she would have put it.
The places I saw looked as different from one another as creatures in a zoo. They shared no particular shape or body parts. But the people who led them were all committed to a singular aim. They all believed that you didn’t need to sacrifice your autonomy just because you needed help in your life. And I realized, in meeting these people, that they shared a very particular philosophical idea of what kind of autonomy mattered most in life.
There are different concepts of autonomy. One is autonomy as free action—living completely independently, free of coercion and limitation. This kind of freedom is a common battle cry. But it is, as Bill Thomas came to realize on his homestead in upstate New York, a fantasy—he and his wife, Jude, had two children born with severe disabilities requiring lifelong care, and someday, illness, old age, or some other mishap will leave him in need of assistance, too. Our lives are inherently dependent on others and subject to forces and circumstances well beyond our control. Having more freedom seems better than having less. But to what end? The amount of freedom you have in your life is not the measure of the worth of your life. Just as safety is an empty and even self-defeating goal to live for, so ultimately is autonomy.
The late, great philosopher Ronald Dworkin recognized that there is a second, more compelling sense of autonomy. Whatever the limits and travails we face, we want to retain the autonomy—the freedom—to be the authors of our lives. This is the very marrow of being human. As Dworkin wrote in his remarkable 1986 essay on the subject, “The value of autonomy … lies in the scheme of responsibility it creates: autonomy makes each of us responsible for shaping his own life according to some coherent and distinctive sense of character, conviction, and interest. It allows us to lead our own lives rather than be led along them, so that each of us can be, to the extent such a scheme of rights can make this possible, what he has made himself.”
All we ask is to be allowed to remain the writers of our own story. That story is ever changing. Over the course of our lives, we may encounter unimaginable difficulties. Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties.
This is why the betrayals of body and mind that threaten to erase our character and memory remain among our most awful tortures. The battle of being mortal is the battle to maintain the integrity of one’s life—to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be. Sickness and old age make the struggle hard enough. The professionals and institutions we turn to should not make it worse. But we have at last entered an era in which an increasing number of them believe their job is not to confine people’s choices, in the name of safety, but to expand them, in the name of living a worthwhile life.
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LOU SANDERS WAS on his way to joining the infantilized and catatonic denizens belted into the wheelchairs of a North Andover nursing home when a cousin told Shelley about a new place that had opened in the town of Chelsea, the Leonard Florence Center for Living. She should check it out, he said. It was just a short drive away. Shelley arranged for her and Lou to visit.