DISABILITY FEB. 8, 2017
One night when I was very young, I lay in my bed across from my older sister’s and described what I planned to look like when I grew up. My wavy brown hair would be straight and blond. My eyes, now the color of oversteeped tea, would turn blue. I wore a leg brace to bed in those days, a metal rod that buckled with a leather strap below my knee and attached to an ankle-high shoe. Though I felt the weight of this contraption as I spoke, and I knew I limped because the meanest girl on our block had told me, it went without saying that the beautiful future me would walk, and even run, with grace.
My sister listened without comment. She’d taught me to put pajama bottoms on my head so that when we danced like go-go girls it felt like we had long, swingy hair, and to dress our Barbies, with their shapely symmetrical legs, in fashionable outfits for their dates with G.I. Joe and Ken. The truest world I knew was the one she and I dreamed up. It made perfect sense to me that who we’d get to be in the mystical world of adulthood was completely up to us.
I have a form of cerebral palsy known as right hemiplegia, which essentially means only half my body is affected by the disability. My right limbs are tight, the muscles underdeveloped, and the fingers of that hand lack the dexterity and fine motor skills of those on my left. Years ago, I read an article about a rather new-age method for working with hemiplegic children. It suggested that while left hemiplegics respond well to straightforward instruction (“Raise your arm as best you can”), right hemiplegics do better with more poetic descriptions (“Imagine you’re reaching for the stars”). This is due to differences between the left brain and right brain. Left hemiplegics have undamaged left hemispheres and tend to be pragmatic. But those of us with the right-side version depend on our undamaged, dreamy and artistic right hemispheres.
My cerebral palsy is relatively mild. I have clear speech, and though I walk slowly and awkwardly, I get around fine. In my 20s, if I considered my C.P. at all, it was through the lens of vanity. How noticeable was my limp? Was I pretty despite it? The answer, I assumed, was in the response I got from men. It was hard to decode. Apparently I was appealing enough to sleep with but not to be picked as a girlfriend.
Then I met a young man. He was handsome, athletic and crazy about me. We moved in together, got engaged, and my old habit of magical thinking surfaced. I believed his love canceled out my disability. Unfortunately, we had little in common. He liked the thrum and excitement of clubs. I preferred small gatherings and intimate conversation. He was happiest on a mountain bike. I was happiest at home with a book. Because of our disparate interests, we maintained largely separate social lives. I didn’t actually mind this. My free time was given over to girlfriends, just like when I was single. Only now I had the perk of coming home to a handsome, affectionate man.
One of my closest friends was, and remains, a woman I came to know shortly before I was married. Hope was my first friend with cerebral palsy. Our connection was immediate and intense, fueled as it was by a sense of recognition that my imminent marriage lacked. I had other friends who “got me” in a visceral, finish-each-other’s-sentences kind of way. But only Hope could finish the sentences I’d never before said aloud, the ones about how it felt to live in a nonnormative body. Before we met, neither of us knew we craved those conversations, but we were starved for them. Though we share many interests, it would be weeks before we could tear ourselves away from the topic of disability long enough to discover what they were.
Without realizing it, I began to live a kind of split existence. By loving Hope I was learning to love a part of myself I’d deliberately ignored. Still, I continued to rely on the myth that being married to an able-bodied man meant I wasn’t truly disabled. Only now do I see that he gave me a safe perch from which to peek at my identity as a disabled woman. I could take it on briefly, explore how it felt to claim it, and then go home to my real life. That is, my life of pretend.
Reality finally hit when we had a child. My husband eventually developed a very loving relationship with our son, but he wasn’t exactly hands-on in the beginning. Before Ethan’s birth I hadn’t understood that parenting is physically demanding work. Caring for a newborn, especially, requires strength, balance and an ambidexterity I simply don’t have. I couldn’t bathe Ethan safely, carry him on stairs or even sip from a water glass while he nursed if his head rested on my good arm. Finally, I was forced to acknowledge that my C.P. is more than a cosmetic issue. Some tasks I could manage by making adaptations, but for many I needed to ask for help.
At first, I felt deeply embarrassed by what I perceived as my ineptitude. But at some point, while I was busy figuring out ways to get the work done, I forgot about the shame.
By the time Ethan turned 3, the physical demands of mothering had lessened and I could focus on the parts that came easily — talking with him, reading together, entering into his imaginary worlds. A year later, my husband and I divorced. Thankfully, by then I understood that my tie to him wasn’t what made me whole.
In a long-ago interview with Bill Moyers, Maya Angelou revealed her theory that most women marry other people’s husbands. She didn’t elaborate, but I immediately understood. Out of hopefulness, impatience, insecurity or for a thousand other reasons, we too often rush into relationships that are poor fits for us, robbing our partners and ourselves of more promising connections. It struck me as likely that those of us with disabilities are especially susceptible to this.
“I have finally married my own husband,” Ms. Angelou went on to say.
Many years after my first marriage, so did I.
Dan and I met in a poetry workshop.
“Of course,” Hope said, when I told her that my new love was not only a fellow writer, but someone with a disability. “It’s like you guys are the same person, only one’s male and one’s female,” said Ethan — not entirely as a compliment — who was 8 at the time.
It’s true that Dan and I are very similar. We’re both romantics yet also fiercely independent. We’re introspective to the point of obsession. Though he’s a decade older, we share a love for the music from his teenage years. And long before we met, many of the same novels and poetry books lined our shelves.
As for our disabilities, they’re nothing alike. Dan was born blind, and that library of his is largely in Braille and audio. He sees light, but no shapes or objects.
“Does the light have a color?” I asked when first getting to know him. But, of course, since light is all he can see, he has no way to know.
Dan confided to me that back in high school and college, he knew how to use a cane but chose to walk without one in an attempt to blend in. Back then, he also sought able, sighted women rumored to be beautiful. When I shared my stories in kind, I was struck, just as I’d once been with Hope, by how little had to be explained. Clearly, though our disabilities are different, the emotions and their residue are much the same.
These days, disability is a mere factor in our daily routines. It’s there when I need to proofread Dan’s Word documents for formatting inconsistencies or tell him which bottle contains Tylenol and which the dog’s allergy meds, just as it is when he has to climb ladders to change our smoke alarm batteries or hold me upright as we walk on ice-slick streets. I read the mail to Dan, of course, but also poems and stories. He reads to me too, running his fingers along pages of Braille as though skimming them through water. And yes, his touch on my skin is just as attentive and skilled.
Disability has also earned a central place in our creative work. We’ve both written extensively about living in these particular bodies of ours, and spoken at universities and on panels about disability poetics. Many of our friends are artists and writers with disabilities. It’s a rich life, one I never could’ve imagined despite my famously active imagination.
Still, had the possibility of this loving bi-disability marriage presented itself to us years earlier, I don’t think either of us would have been ready. We needed the right combination of fallacies, wrong turns and formative relationships to lead each of us exactly here.
Ona Gritz is the author of “On the Whole: A Story of Mothering and Disability,” a memoir, and “Geode,” a collection of poems.
Disability is a weekly series of essays, art and opinion by and about people living with disabilities. The entire series can be found here. To reach the editors or submit an essay for consideration, write firstname.lastname@example.org and include “Disability” in the subject field.
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