As a disabled woman, she looked to able-bodied men to prove her value. It wasn’t until her forties that she redefined beauty, ditched her own low expectations—and found the deepest love.
It is 1984, and, at 22, I’m fresh out of college, sharing an apartment in Brooklyn with two girlfriends. One of them has an out-of-town friend, Jay, staying with us, and I find myself thinking about sleeping with him. Jay has thick, curly hair and warm, dark eyes. He’s smart, funny and politically minded. And we have one thing in common that I share with no one else I know: We were both born with cerebral palsy. My case is milder. I walk with a limp that resembles someone favoring a sore foot. Jay’s gait is an elaborate dance of dips and twists. I imagine that if I were to lie next to him naked, we would gently touch each other’s tight limbs. He’d note, with recognition and affection, the difference between my thin, underdeveloped calf and my full, shapely one. I’d learn the places his musculature was uneven, and we’d talk easily about what living in our bodies feels like.
Only I’m not ready for that close a mirror, that level of intimacy with my disabled self.
Soon after, I enter graduate school for creative writing and become entrenched in my work. My relationships with men are brief and casual. I find myself drawn to musicians and poets, all able-bodied.
It isn’t until I’m 25 and living in Manhattan that I meet another woman with cerebral palsy. Her name is Hope, and we connect instantly. We have rich, breathless conversations; in our own way, we are in love. But our love is platonic. In fact, I’m engaged to be married.
Richard* is unlike the artsy guys I usually date. He is an economics major, a jock, and he’s gorgeous. My friends say he looks like Bruce Springsteen. He’s the kind of guy who would have ignored me in high school. In those days, the boys I attracted were offbeat and unsexy: the class clown, the character actor in our school plays. But to the sought-after, attractive, athletic boys, even a pretty girl with a limp was invisible. Now Richard’s interest has me reeling: We get married despite the fact that we have little in common. His favorite way to spend the weekend is trying an extreme sport. We tell each other that our differences balance us. And it’s true that he stretches me in good ways: He encourages me to take skiing lessons and teaches me to ride a bike. In turn, I nurture a love of reading in him.
My disability is something we rarely address directly. He gets impatient with my slow gait and often walks ahead of me. But he’ll also kiss the fingers on my right hand, the one weak-ened by cerebral palsy, and tell me, “I love this hand because it would never hurt anybody.”
Like most disabled children, I was given the message that I should be grateful to anyone who accepts me. But as Richard’s wife I’m not just acceptable in the able-bodied world, I’m a success story. In this society, in which finding a husband is something to aspire to and beauty is treated as an accomplishment, I’ve made it.
Accompanied by my handsome, athletic husband, I’ve earned my place in something like a higher class. I don’t live in the ghetto of the damaged. He’s beautiful. Maybe, by association, I am too.
Our marriage is not an easy one. Our disparate interests pull us in different directions. In some ways, I don’t mind this. I like that a snowboarding trip for Richard means I have a free weekend to spend with Hope and other women friends. It also gives me time to write. But Richard is hot-tempered and hard to please. We stay married for 10 years, during which time we have a son, but we finally separate when Ethan is three. A year later, we divorce. I expect to be sadder than I am. Mostly what I feel is relief that I no longer have to work so hard to keep Richard happy.
One night after Ethan is in bed, I take a long bath and let my mind wander toward the idea of dating. No more handsome men, I caution myself. I calculate that the oldest man I went with in my twenties was 13 years my senior. That means that at 37, if I keep to the same math, I can date someone who’s 50. I’m startled by how old that sounds. It occurs to me that I never dated a man with a disability. I find the possibility intriguing.
I have a brief flirtation with a real estate agent who has a prosthetic leg. He’s sweet and attentive, but I soon learn he’s already involved with someone. A few months later, I attend a friend’s art opening, where I meet her studio-mate, Paul*.
Paul is not disabled, but he’s not traditionally handsome either. He has a kind face and a warm manner that draws me in. We chat, and I find myself growing confident under his approving gaze. It turns out he’s 50.
Paul and I go out to nice restaurants, light movies and spend a good deal of our time together in bed. I joke to my friends that he’s the anti-Richard. He’s easygoing and complimentary. With Richard I wanted to believe that his good looks reflected well on me. Now Paul tells me I’m the beautiful one. In his company, I start to see myself that way.
Beauty. As a visual artist, there is little Paul values more. “Look at the light reflecting off that building,” he’ll say.
Or “Check out that sunset.”
And just as often, “She’s pretty,” turning to watch a stranger walk by.
Paul does commercial illustration, portraiture and figure painting. His specialty is the female form, his favorite subject the pinup model.
As in all pinup art, the figures in his paintings are slim, shapely young women posed in lingerie, stockings and garters. Their expressions lack any emotion other than the desire to seduce. Here, a conflict arises in me: I’m troubled by the messages his images deliver. They place so high a value on being attractive, yet offer such a narrow sampling of what that might look like. They also seem to suggest that women’s role is primarily to please and titillate men. And yet, just as being chosen by a handsome man once made me feel validated, I’m flattered to be with one who places such an emphasis on idealized beauty.
Paul takes me shopping. I shed the baggy, body-hiding outfits I’d taken to wearing in what had become my sexless marriage and choose formfitting, flowing clothes. I let my hair grow long, begin applying makeup with care.
I’m brushing 40 and turning heads for the first time in 10 years. It feels good, as though, once again, I’ve shed the stigma of disability.
June comes, and with it, a wedding. Paul’s son is marrying his high school sweetheart. Together, Paul and I pick out a lovely black beaded dress and a pair of heels that I’m almost sure I can walk in. I’ll be meeting his ex-wife and her family for the first time, and I can tell he wants me to impress them.
I find myself feeling edgy and upset. Partly, I’m angry. I’m smart and creative. It shouldn’t matter what I look like. Another voice inside me says, I’ll never pull this off. I’m just a crippled girl playing dress-up.
At the church, I sit in a front pew. Paul stays behind to get in position to walk down the aisle with his family. Suddenly, he comes up beside me. “You’re supposed to walk with me,” he says.
“What? No one told me.”
The wedding is about to start. They’re waiting for us. People stare as we rush up the aisle so we can walk down it moments later.
I’m miserable. When Richard and I married, we didn’t have a procession. I don’t want to walk with a roomful of people watching me. Now the music starts, and I haven’t a choice. I teeter on my stupid shoes that won’t stay on my feet properly.
During the car ride home, I try to explain to Paul how I felt. “You should have walked with your mother,” I tell him. “It’s not as if I’m family.”
“But you are,” he says. “I felt proud to have you walk with me.”
It’s true that we are getting to be like family. Paul moves into my apartment. He gets along well with my son. We buy furniture together and begin building a loving domestic life.
We’re affectionate. We make each other laugh. I feel happy.
One point of contention remaining between us is pinup art. Paul paints wonderfully, can render any likeness. I think he’s wasting his talent on such superficial subject matter. “Don’t you want to say something with your art?” I ask.
He shrugs. “I just want to capture beauty.”
“Then how about varying how you define it? Paint an older woman. Or someone who’s a little heavy. Paint someone with a visible disability.”
“Oh, honey,” he says. “You’re beautiful. I don’t even notice your disability.”
It frustrates me that he mistakes a political objection for insecurity. Yet I can’t deny that inse-curity is in the mix. Part of me fears that one day he’ll run off with a half-naked, able-bodied model.
I’ve always believed that the most hurtful way a person can end a relationship is by leaving to be with someone else. If that happened to me, I’d be devastated. How could I help but compare myself with the chosen one? And in doing so, how could I see myself as anything but lacking?
Time and again, Paul comes back from his studio happy to be home. “You and me,” he says, “for the next 40 years.”
It’s such a breezy relationship compared with my marriage. There are small disappointments. I wish he were a reader and that our conversations could go a bit deeper. But I’m used to turning to my friends to nourish my intellectual life. I’ve come to associate stimulating, insightful talks with women.
Paul and I have been together for four years when I go to Cape May for a weekend to study with the poet Stephen Dunn. Just before the workshop begins, a tall blind man comes into the room and is guided to the seat beside me. He takes out a Braille laptop and types a few notes. “We’ll read each poem aloud twice,” Stephen tells us. “Especially since you’re here, Dan.”
Next to me, Dan smiles. “Oh, good.”
There’s such warmth in his voice that it catches me off guard. During the work-shop, I’m struck by Dan’s thoughtful comments. His writing is well-crafted and mov-ing. I notice we both mention ex-spouses in our poems.
Afterward, Dan asks me to walk him to the next event. He takes my arm, and we talk easily as we stroll. Dan has finely chiseled features and a smile so bright it actually makes me think of the New York skyline lit up at night.
I find myself aware of Dan’s presence throughout the weekend. He often has an entou-rage of friends, yet is pleased whenever our paths cross.
We exchange numbers the last day of the workshop. It’s OK, I tell myself, when I won-der if I’m being disloyal to Paul. I had friendships that felt sparkly during my marriage. It’s natural.
A week later, Ethan and Paul have dozed off on my bed while watching a movie. I sit at the computer, revising an essay. The phone startles me.
I’m not at all surprised that Dan has called. What does surprise me is how relaxed I feel, and how quickly we begin sharing our most personal thoughts and stories. We talk about what our marriages were like, read our favorite poems aloud and recount childhood memories.
Dan tells me he’s been blind since birth. I close my eyes, trying to imagine what it would be like to have never seen the sky. Or a face. For the names of colors to hold no meaning.
“How do you define beauty?” I ask.
He describes being surrounded by music so that it reverberates through his bones.
“Do you know I have a disability?”
“Yeah, I felt it when we walked together,” he says. He asks good questions about my cerebral palsy. I find myself revealing ways in which having a different body has left me feeling vulnerable. There’s no need to explain. He gets it completely.
When I mention that I’m living with someone, I sense disappointment in his voice, but we’re so happy in this conversation, we don’t dwell on regrets.
“When would you like to talk again?” he asks me, four hours later.
I can’t help myself. “How about in 10 minutes?”
Soon after, I climb into bed next to Paul. He’s snoring rhythmically.
“Do you want to marry me?” I whisper too softly to wake him. I have this strong sense that I’m heading somewhere, and if he doesn’t want me to go, he’d better hold on to me very tightly.
Dan and I try to remain what Paul has dubbed poetry friends, but our feelings deepen. He’s the first person I’ve met who understands both the poet I am—savvy and confident—and the self-deprecating crippled girl I also carry. Finally, I tell Paul. His solution is that we try an open relationship, something he’s always imagined would be ideal for him. I have seri-ous doubts. But I’m spinning and in love, and this would be a way for me to explore my attraction to Dan without deciding then and there to leave Paul.
Dan and I become lovers. Paul begins dating casually. It’s not long before my bond with Paul starts falling apart. Things that had been small trouble spots are suddenly glaring problems. I notice how quickly he brings all conversation around to himself. Did he al-ways do that? Also, I’m bothered by how, every night, he switches on the television within an hour of arriving home. He enjoys nothing more than to cuddle up with me and fall asleep watching a sitcom. I know this could make many women happy, but I’m hungry for something richer. I used to watch the beginning of shows with Paul, then wander off to read or write. Now when Paul turns on the set, I go into another room and reach for the phone.
Through all this, I confirm for myself what I already knew: I’m monogamous. Sex and love are entwined for me in a way they weren’t when I was in my twenties. Knowing that Paul is out there pursuing casual flings makes sex with him even less appealing. I begin to wonder what’s left to protect.
What’s left to protect is, of course, Paul’s heart. I’m aware that his choice to date other women is a reaction to my relationship with Dan. Paul tells me often, and with tears in his eyes, that he loves me, that he wants us to be together for the rest of our lives. He’s a good guy. He treats me well. What kind of person would hurt someone like that?
The truth is, I’ve felt restless for a while. I’m ready to move on. The question of what kind of person that makes me is complicated. Good, caring people outgrow relationships. But what about those of us with disabilities? Society gives us the message that if a desirable partner chooses one of us, it is nothing short of a miracle. One doesn’t toss miracles away. Maybe that’s why I let things grow so serious with Paul. Maybe it’s also why I held on to my marriage as long as I did.
I think about how much I love Dan and how much we have to offer each other. Can a crippled girl allow herself to break a decent man’s heart? In my case, the answer is yes, if it means breaking free of my own low expectations. I make the decision to end my relation-ship with Paul.
Dan lives near Philadelphia, a two-hour bus ride. Still, most every weekend, we are to-gether. During the week, we spend hours on the phone.
“Our relationship is one long conversation,” I tell him.
Before I met Dan, I tried to make disability as small a part of my life as I could. When attention was brought to my cerebral palsy, or I had to ask for adaptations, I felt embar-rassed. Dan can’t worry about such things. Streets, train stations, theaters, stores and res-taurants have all been designed for the sighted. For Dan, going about each day means re-questing assistance and advocating for himself. And while I once thought I was successful in hiding my disability from people, I’ve come to realize that they hid some of their preju-dices from me. Because my cerebral palsy is relatively mild, people rarely talk down to me. The bias against the disabled is less concealed when they encounter Dan. A number of times I’ve heard people refer to him almost as though he were an inanimate object.
“Put him over there,” the driver tells me as I guide Dan onto a Greyhound bus after a short weekend together.
We choose to show this man that Dan has a life worth envying. Our kiss goodbye is long and passionate.
Much as I took issue with Paul’s limited ideas about beauty, now I have to acknowl-edge that I’m sometimes guilty of the same thing.
I’m meeting Dan for lunch with his friend who trains guide dogs. Afterward, they are traveling to Virginia to meet potential donors to the training school. I see them walking toward me and my throat tightens. Without realizing it, I had been hoping this friend would be matronly and unappealing. But no, she’s lovely.
Then we attend a concert with a longtime friend of Dan’s who is quite plain. Months later, I learn that they had once been romantic. “Her?” I hear myself say incredulously. In the space of a glance, I’d named her a non-contender.
“The last thing I care about,” he tells me, “is a pretty face.”
“Define beauty,” I had asked of Dan during that first long telephone talk. Now he touches my hair, puts an arm around my waist and calls me gorgeous. He loves the feel of my hair and the planes of my body, but mostly what’s gorgeous to him is the woman who, conversation by conversation, I’ve revealed to him.
One day a friend confides her fantasy about making love with a blind man. She’s certain that she’d feel more self-assured and be more open in bed, knowing that her partner couldn’t see her.
I think of Dan’s hands exploring my body. Those hands he reads with, has felt his way through the world with.
“I’ve never been so closely looked at in my life,” I tell her.
It’s true. It’s also true that since Dan and I have been together, I’ve never looked so closely at myself.
*Some names have been changed.
Ona Gritz is a prizewinning poet and children’s book author. She writes about motherhood and disability for Literary Mama.