In 1516, the London lawyer Thomas More wrote a playful treatise about an island in the New World where every man and woman had to spend at least part of their lives practicing agriculture, criminals were chained in gold, and religious differences respected. For the title he coined the word Utopia, from the Greek topos place and ou not. A place that does not exist in the physical realm, but percolates in the mind, offering up possibilities for alternative ways of living. Dreaming up different–and better–worlds than our own did not, of course, begin with Sir Thomas More, but he sure came up with a catchy word for it.
In the centuries since More’s little book, the practice of imagining a kinder, wiser, more just, or simply less insane world has been a potent fuel for all sorts of artistic, literary, and political movements–as well as murderous mayhem.
My first novel was about a white businessman from nineteenth century New England who became disgusted by the division and oppression he saw all around him and set off to establish a workers’ paradise in the Chihuahuan Desert. The economic engine of this venture was a mercury mine, with its clouds of toxic gas. As you have probably guessed, I took a dim view of wealthy Americans implanting the world with their new and improved plans for living.
By the time The Mercury Fountain was published (ten years after being written), I had become a wealthy American. Not by dint of hard labor–I work plenty hard, but rarely get paid–but by dint of marrying a lawyer. Anyway, right as my novel about the self- delusions of an American utopian came out, I found myself with the means to launch my own utopia and was, somewhat embarrassedly, doing just that.
It was called Extreme Kids & Crew. It was born from my desire for a place outside of our home where all three of my children would fit in: Felix, my firstborn, whose autism and cerebral palsy had both broken and opened my world, and Happy and Miranda, whose bodies and minds had given them a little less trouble. I wanted to make a sort of communal living room where my kids could play alongside other families shaped by disability, a place that would be accessible to all, regardless of income, background, peculiarity–the only requirement would be an OKness with disability and an agreement to maintain certain standards of safety and kindness.
I imagined this place in a converted warehouse with sun streaming through the windows, vertical gardens, miniature swimming pools… Alas, we are not that wealthy. We ended up converting a couple of cinder block classrooms in a preschool into a small sensory gym and used the hallway outside to draw murals. Modest as it was, families came from every borough in New York City and most returned. Weekend after weekend, parents cheered on each other's children, siblings met each other at the art table, disabled kids laughed in the ballpit–and everyone saw that they were not alone. One mother wrote that the atmosphere of acceptance was like oxygen she didn’t know she was missing.
A dozen years later, Extreme Kids & Crew has become a haven for thousands – and an ever-evolving wonder for me. I am no longer in charge; I simply watch from the sidelines, buoyed by the joy that so often bubbles up when people who often feel invisible or shunned are seen, celebrated and encouraged to express themselves.
I had to step down in order to start my current project: Lonely Worm Farm, an ecological, art infused herb, veggie, flower and berry farm in the Hudson Valley of New York. Eventually it should provide jobs for disabled adults (including my son), wheelchair accessible trails and a garden designed to spark deeper connections with nature. I am not doing this alone, of course. I work with a full time farmer/land tender named Jess, part time artists and organizers and group of steady and delightful volunteers from The Arc Greater Hudson Valley.
I started Wayward Utopias to make Lonely Worm Farm accessible to people who might not be able to visit in person—or people who have, and want to keep up with our fence busting goats, our herbs and trees, the mist that rises from the pond, and more. So much more.
A word or two about subscribing.
Please subscribe! There is no paywall. Everyone has access to everything. However, if it’s not a hardship, I would be grateful if you would consider a paid subscription. Half of your money will be donated to Lonely Worm Farm Arts and Agriculture Programming, a non profit dedicated to offering rewarding work and a supportive community to disabled adults. Half will go to me, as writers should get paid for their labor, too. Thank you!
Sick of the screen?
Try my old fashioned books. The Mercury Fountain, a New York Times Book Review Critics’ Choice novel about a stumbling utopia in the Big Bend of Texas. Love Maps, a sequel (kind of) concerning a New York City painter, her missing husband and her problematic sister. And Strange Beauty, a memoir about becoming a mother and the great many things my son, who barely uses language, taught me.
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