The summer stretched long and hot in southeastern Ohio, where the Appalachian hills begin their climb. The dirt road painted everything white with dust; a drought had hit us early and promised to cling late. I was 12, my brother 8; we’d climbed into the bed of my father’s pickup truck — along with a dozen empty plastic containers. We did it twice a week, bouncing in the back on our way to the pond at the edge of our property for water. We had to. Otherwise, our crops would die, and that garden was the only way we were getting through winter well-fed.
My father had suffered a massive heart attack earlier that year; his job wasn’t waiting for him when he recovered. My mother had just survived the first of many bouts with cancer — and had been laid off. No income, no insurance, eking out a living on dwindling unemployment: We plowed up the extensive lawn and planted rows and rows of vegetables we could can and preserve. My first experience of gardening was a lesson in scarcity and sustenance. It would be years later, in adulthood, that I would also discover the joy.
When I next approached the garden plot, it wasn’t for food security but succor of a different kind. I am disabled; I am autistic and have a connective tissue disorder that causes problems for my mobility. Gertrude Jekyll, a 19th-century woman who designed more than 400 gardens, once said, “A garden is a grand teacher. It teaches patience and careful watchfulness; it teaches industry and thrift; above all it teaches entire trust.” I needed just such things, myself, for I couldn’t trust my own body and hadn’t learned to accept new realities. Still, I’d always been a willing student. Maybe I could find my way by investing in the soil — a new way of digging in, different from those sweltering summers when I could still move nimbly between rows of beans and corn. And so I wondered, what would disabled gardening look like? More importantly, how would it feel?
Disability activist Charis Hill lives with axial spondyloarthritis (axSpA), which causes pain and swelling in the spine, and Ehlers-Danlos syndrome (EDS). I’m familiar with EDS because I have a “not” diagnosis; that is, my connective tissue disorder is not Ehlers-Danlos, and we don’t have a designation for what it is. In the dialect of my Appalachian roots: I ain’t broke, but I ain’t fixed. Charis understands this well; as a soccer player in college, they had debilitating back pain. Doctors attributed it to their sports activities, despite some evidence that their lower vertebrae were fusing together. Getting a diagnosis proved elusive; after all, axSpA was considered a man’s disease, and Charis was assigned female at birth. They were even told that the problem existed “all in their head.”
Charis would wait well into adulthood for a diagnosis, and it would be 2018 before they were granted disability benefits (after two years of applying, re-applying, and fighting). This, Charis explains, offered the bare minimum for needful support, but they required security. “I needed to buy a house for survival,” they told me; “for housing stability” and also as a place to grow food — fruits and vegetables that would otherwise be financially out of reach. I thought of my family’s Appalachian half-acre and hands grown coarse from breaking beans. Which is to say: I understood.
The journey to home-ownership tends to be fraught in the best of times. “I only qualified for a loan in literally the bottomest bottom of where homes could possibly be,” Charis explains. Social Security Disability Insurance benefits simply aren’t enough to make it happen, usually, but having been recently awarded back pay — with the remainder of an inheritance from their father’s death — meant they could lead with a large down payment. Even then, it would be a race. “I made an offer on this house at 11 at night because we were like, if we don’t do this now, I’m not gonna have another chance.”
In the end, they beat out an investor on an “as-is falling apart house” that had the one thing they most wanted: a little plot. Yes, it was overgrown and largely barren, a dumping ground for broken telephones and lamps and an old home hairdryer with a dome. It would take planning. It would take time. But in the warm sunshine of Northern California, Charis had their very own garden. “Oh, my gosh!” they told me this spring, clasping hands. “I can grow fruit!”
In so many ways, a garden is a giver and a gift. Charis speaks of reclaiming soil for nature; on their tenth of an acre, they have a 15-by-25-foot vegetable garden and dwarf fruit trees, all with recuperated soil — which required the removal of poor soil and the enrichment of new soil for each planting. In the long, narrow yard, Charis created raised beds; partly, these allow for access. Far less stooping, easier digging, weeding, harvesting. But there are other reasons, too; without knowing the history of the land, Charis must account for possible ground contaminants, and the raised beds provide plants with clean and healthy soil.
Charis has a greenhouse and a space for composting, too. The greenhouse might be a luxury, with its heat mats and grow lights, but for Charis, the joy abides in little things, and everything happens little by little. I know, because I too dig furrows in reclaimed land, and I’ve begun the same raised close-planting method myself, so I can tend the soil while seated on a stool instead of kneeling at ground level. The manual labor of a garden looks, at first blush, like it should be beyond reach for those with physical disabilities, and it’s true that there can be barriers. Big projects require extra hands, Charis tells me, but when a garden is designed with disabled people in mind, anything is possible.
For Charis, the garden offers three kinds of sustenance: “It’s a necessity in multiple ways because it feeds me mentally, spiritually, and nourishes me physically,” they say. Charis also gives away produce; friends and neighbors receive modified CSA boxes, and return with other needful things, like fresh chicken eggs. Sharing food, and sometimes sharing labor, reinforces those bonds. Charis’s new garden-grown community extends to the flora and fauna, and even the invertebrates. “Let me tell you about the worm,” Charis says. It wriggled, fat and robust, from where they’d dug a hole for seedlings. The worm reveled in wet summer soil, soil that had been composted and cared for. I can easily imagine the scent of turned black dirt, a mix of petrichor and decaying leaf litter, and the intangible odor of microorganisms as they improve Charis’s world.
“This soil is happy because this worm is here,” they tell me. There has been a great metamorphosis, from a plot of ground stuck through with junk and rusty car parts to a place with birds, bees, squirrels, and visiting felines. “I watched them move in because I’ve created a habitat for them. ... It’s like I’m not alone, living here. I have created a healthy ecosystem. And whoever comes here after me will get what I helped create out of this tiny piece of land.” Charis’s garden is a legacy — a great giving. I was ready for my own reclamation project, a recovery of soil and of self.
I was 16 when I first began to despair of sleeping through the night. I already had irritable bowel syndrome plaguing my digestion and nutritional input. I’d grown used to that, but after high school track and field season, I suddenly developed new symptoms. The joints of my neck alternated between a dull ache and stabbing pain, usually causing tension headaches as well. I slept between two pillows, face down, right arm slung up over one and left arm tucked under the other. I began seeing chiropractors and other physio doctors; mostly, as with Charis, my pain was chalked up to sports activity. By college, I’d quit the track team because of back pain. By the age of 26, I’d ruptured a disc and, for a time, could scarcely walk upright. I worked my way back through physical therapy and personal training, but for some reason, the injuries compiled. Hips would seize up, shoulders would dislocate.
At 45, there are things I just can’t do — and digging holes is one. I asked Charis how they got around the difficulty of removing soil for the dwarf fruit trees; their answer plucked a familiar thread. “I’ll start it and it just takes a long time,” they say, “or a friend will come.” And here, we meet two of Gertrude Jekyll’s garden’s lessons: Gardening teaches patience, and it teaches trust. I am married to a wonderful partner; he is there to help me, yet for many years I would not let him. I would do all the hard garden work in a day, sometimes literally crying in pain, often unable to walk for the next week. I didn’t know how to ask for help; I didn’t know how to receive it; and I had internalized a lot of our culture’s fixation on instant gratification. I tell Charis, even though it’s an embarrassing admission; they understand that too — “sometimes we just have to expend the energy,” even when there is a price. But that isn’t the way to joy. This spring, my partner and I did the work together, sharing in it and making it a part of our life together.
I needed another lesson; Jekyll calls it “careful watchfulness.” For Charis, it’s a conversation. When we spoke, the weather where I was in Cleveland offered snow and gray skies, but in the little California greenhouse, Charis watched kabocha squash germinating to “open up its first leaf.” Nature is neither fast nor slow; it works according to its own schedule, and we must be the ones to accommodate. Charis “waited for the land” to speak, to say: “‘This is what this should look like, and this should go there.’ The whole process of even listening to my property communicate that to me [means] I have a really deep, close connection to this place. And in a way, it’s what keeps me going.”
The parallel between adapting to the needs, wants, and rhythms of the soil and a life of adjusting to new levels of ability are not lost on me. But that correspondence works both ways; the earth and its needs are also like a disabled, mortal body.
Charis counts this as their most radical view: The environment we live in, due to human actions, is presently on life support, they tell me. “I think that because disabled people are used to sort of seeing our own mortality more easily, we can teach the world-savers a lot about putting the world into hospice.” This is not a hopeless view, but a hopeful one. When for a moment we stop focusing on the “fixing” and instead recognize the beauty, value, and ephemerality of nature, we can begin to love it so much better. Nondisabled environmentalists, Charis suggests, can learn much from disabled people about shifting beyond large-scale approaches of a “cure” toward inclusive, earth-loving care for a sick planet.
I look out at my quarter-acre urban plot. Over the years I’ve added vegetable, herb, and medicinal gardens. I have an apiary. And I have a coop where chickens provide eggs and do a bit of gardening themselves. Like Charis, I have chosen a more vertical growing scheme to save room and to make it easier to harvest. I don’t have to worry about raking and turning over the soil, not with my master hens ready to do it for me (fertilizing along the way). I’ve watched the garden flourish. I’ve watched some of it die. I’m going to lose the great maple that anchors the yard. I’ve also lost some of the hens, whose names I love to recite: Jezebel, Blue, Rocky, Elvira, Florence, Matilda, Martha, and Geraldine. I saved Rocky from the hawk; I couldn’t save her from disease.
And then there’s my own body, which seems to have new functionality issues every year, despite my efforts. I must love it, and love myself, too. It recalls something Cheryl Green, disabled producer and transcriptionist, once shared with me — a photograph of her hand, each finger topped with velvety red thimbleberries: “Their pleasant little caps were a rare moment of sensory pleasure on that hand ... going downhill with inflammatory arthritis.” It was so important “to look at that hand and have a positive feeling,” a sense of peace and joy. In the garden, every success and every failure, every accommodation and every solution, is an act of balancing beauty and mortality, a dance of joy and grief.
Disabled gardening makes room for the small and innovative. I’m privileged to have so much space; Charis, on less than half an acre, feels privileged, too — to garden your own land is a blessing. Charis was keen to clarify, “Growing parsley in your windowsill is still gardening.” And when we make something grow, we become part of it. “I’m looking at some birdhouse gourds that I grew. ... I’m looking at the trellis I made with old galvanized pipes, and the old screen door I’ve repurposed into a trellis, and the bamboo shade structure made for my herbs, and ... the peas climbing on the trellis,” Charis says. “I feel a connection to them, even through the walls.” I know; I can see it on their face. “I want to go out there and see them multiple times a day. I want to talk to and have a communication with every plant.” I am in awe of that shared communion.
When I stand in the garden and listen hard enough, sounds begin to rise from the background. The birdsong differentiates; the insects hum to a changing cadence; there’s music in the leaves above and the grass below. I swear I can hear things growing. I cannot use a hoe or rake very well; I have a kneeling pad to help with the ups and downs. I largely plant what doesn’t require weeding; probably lots of people would consider what I’m planting to be weeds. Not Charis, though. We have the same herb book and have already shared notes about plantings (their list has 500 varieties).
I cannot work the way I used to; I have learned to love my body and to listen to it — as Charis listens to the earth. But this body is happiest when in that garden, a plot of ground that connects nature to me, and through me, to my friends and community. “I’m not living in scarcity when I’m gardening,” Charis says. It’s about fullness. Possibility. Hope. And yes, joy. We share it, as disabled gardeners, with nature, and it’s our way of giving back to the world.
Brandy Schillace is an autistic author, historian, and editor of BMJ’s Medical Humanities Journal.
Ananya Rao-Middleton is an illustrator and disability activist who uses her work to speak truth to the voices of marginalized communities.
Cheryl Green is an access artist and filmmaker with acquired disabilities, whose work focuses on disability identity and culture and on making media accessible.
Editor Alice Wong is a writer, activist, and consultant based in San Francisco. She is the founder of the Disability Visibility Project and author of Year of the Tiger: An Activist’s Life, available now.