“You get startled by your own disability?”
Dan, my boyfriend, asked me this one Saturday night, incredulous. We were walking down Eighth Street towards the East Village for dinner. The sidewalk was crowded, and I noted that without Dan’s guide dog there, it was harder to navigate than usual. People notice a guide dog, even New Yorkers, who are notorious for never noticing anything. They part when they see us coming. They know to make room.
For the moment, though, we appeared to be an ordinary couple walking arm in arm on a spring-like evening in mid-fall. I was used to this, more used to “passing” than having people notice my disability. When I told that to Dan, he was surprised. The first time we ever walked together, ten months prior, he noticed that I walked funny. Surely it had to be just as obvious to people who could see.
It is and it isn’t. I have cerebral palsy, which is an umbrella term for any physical disability caused by damage to the parts of the brain that control motor function. The range of its effects from person to person is enormous. Some people with CP have no use of their arms or legs, some can’t speak or swallow, some are severely limited mentally. In my case, it’s mild. It affects only the right side of my body. I have a limp and poor fine motor skills in my right hand.
It’s more noticeable if I’m tired or stressed. Less if I wear high heels. Some people take it in right away, the way they might observe that I have dark hair. Others can know me for months and suddenly ask, “What happened? Did you hurt your leg?”
This is one place where my experience as a person with a disability really diverges from Dan’s. I often forget about it myself and am caught off guard by such questions.
I was the only person with a disability in my family and in my circle of friends growing up. It was treated as something private by my parents — so much so that other than working out the logistics of fitting in doctor’s appointments and physical therapy, we rarely talked about it. As a result, instead of seeing myself as a disabled person who managed pretty well, I thought of myself as an able-bodied person who was terribly clumsy.
Like most klutzy kids, I avoided sports. I told myself it didn’t matter. After all, what I loved most were books and music: the life of the mind over that of the body. Still, it stung sometimes to see my friends casually tossing a Frisbee between them or to hear them make plans to meet up at the basketball court for a pickup game. They’d invite me to come, but whenever I did, I wound up sitting on the sidelines, a spectator. I preferred to stay home with a book. More and more, I focused on the things I was naturally good at, and as I got older, it became easier to surround myself with people who shared those same loves. Yet, when I was 25, I started seeing Richard, a handsome, athletic guy with whom I had little in common. I was both startled and flattered that he liked me. And, eventually, for all the wrong reasons, I married him.
Richard and I led what I later described to friends as “congenial separate lives.” He had his friends with whom he played sports, while I went with mine to poetry readings and museums. I think we both liked the independence such a marriage allowed for. Neither one of us gave much thought to how all that would change after I got pregnant.
There have been moments in my life when I’ve felt slapped in the face with my disability. When suddenly, I can’t pretend. I come upon a winding staircase with no banister. I have to walk down a slick, icy street to get home. I take on a job that’s way more physically demanding than I had expected. This is what happened when I became a mother.
I approached my pregnancy as the good student I was. I read parenting book after parenting book, discovering that there were two opposing schools of thought. One said, “Let babies cry and they’ll learn to self-soothe.” The other said, “Hold them, nurse on demand. Babies intuitively know what they need.”
The idea behind Attachment Parenting is that if a baby is held rather than left to cry, he or she will grow up secure, having experienced the world as a loving, responsive place. This made emotional sense to me. I knew I wanted to raise my child that way. Doing so, however, proved more challenging than I had imagined. Nursing on demand turned out to mean nursing round-the-clock. If Ethan wasn’t in my arms, at the breast, he wailed.
On our third morning home from the hospital, Richard returned to work. I was hungry and wanted to fix myself a bowl of cereal. We had a bouncy seat for the baby, but every time I attempted to place him in it, he cried. Not a light, cranky little cry. He screamed as though someone was attempting to pull off his limbs. I wanted to raise a confident, secure child. An attached child. I didn’t want to mess up. “Come on,” I pleaded, picking him up for what was probably the seventeenth time since I decided to attempt breakfast. “Please let Mommy eat.”
I felt completely inept. By the time the phone rang, I was crying almost as hard as the baby. My friend Marlene, mother of two, tried her best to reassure me.
“Don’t worry,” she told me. “You get used to doing things with one hand.”
I was speechless. Didn’t she know that the one hand I had that was capable of pouring cereal and milk, of using a spoon, was the same one hand that could safely prop an infant’s head?
Having that essential fact about myself go unacknowledged had the same effect as being asked, “What happened? Did you hurt your leg?” It startled me into remembering who I was. For once, I didn’t want to “pass” as an able-bodied person. I wanted to be looked at squarely, limitations and all. I wanted to look at myself that way.
At some point, I figured out that if I used a Snugli, I could hold Ethan close to me and still have my hands free. But that morning, something bigger happened too. Motherhood helped me really claim my identity.
When I thought of myself as able-bodied but clumsy, I felt incompetent as a mother. Owning my CP really shifted that view. I am a capable woman who has a disability. Stating it feels like letting out a breath I didn’t realize I was holding. It allows me to feel my own strength.
Obviously, I don’t always retain this perspective. If I did, I wouldn’t still be talking about “passing” nine years later on a dinner date. But when I do remember, a job like mothering my son doesn’t seem quite so unmanageable. I know I can do it. There are simply times when I have to do it a little differently.