When I was a child, there was a brown paper grocery bag kept on the floor of my closet, on the left hand side toward the back. Inside was my ugliness.
It took the form of a single shoe: ankle high, white, with a cut out at the front that exposed my toes, a leather strap above the laces, and a hole near the ankle where the brace attached. The brace was a thin metal pole with a strap that matched the shoe and buckled near my knee. I had to wear the shoe at night and it was ugly. It felt ugly. Heavy and stiff, it got caught in my blankets and sometimes caused bruises on my knees. But this isn’t the ugliness I mean. I was a pretty little girl, but I believed that the shoe was my secret inner ugliness. It was kept hidden and mentioned only in private as my mother helped me put it on at bedtime. I believed the shoe was my disability and that my parents’ discretion around it was their unspoken shame.
It’s common in our culture to mistake the objects and equipment people with disabilities use with disability itself. To see a man using a wheelchair and think that, somehow, the wheelchair is what is wrong with him. For much of my life, I avoided anything that brought attention to what was different about me. And I was fortunate. I stopped having to wear the night-brace by the time I was eleven, and though my cerebral palsy also affected my arm, making it weak and inflexible, I was only given a set of exercises for it to do privately, at home. Brace gone, I never needed any more adaptive equipment. In my skewed way of thinking, I never had to wear my ugliness on the outside.
When I had my son, I needed a special pillow in order to place him in the proper position for nursing. I also found I couldn’t easily hold him while I walked unless I had him strapped to my chest in a carrier. Both were adaptions, but the objects held no stigma. The nursing pillow was brightly colored and had the cute name of “Boppy.” The carrier was chic and European and popular among new moms.
Ethan was a fast toddler who often rushed ahead of me on our walks. Still, I managed to ingrain in him the importance of stopping at corners and waiting for me to catch up. When he was two and a half, we were invited to spend a long weekend with a friend who lived in upstate New York. My husband was away and I don’t drive, so we needed to catch a bus at Port Authority. I realized the only way I would feel safe bringing him to that big urban bus station was if I could attach him to me somehow.
I always felt critical of moms who put leashes on their children. I believed it was a lazy alternative to doing the work of setting limits. I also thought it dehumanized children. Of course, that was back when I knew everything there was to know about parenting. Back before I became a parent myself.
I bought Ethan a “safety strap” that attached to a fanny pack at his waist. By then I’d figured out that toddlers don’t worry about being dehumanized. On the contrary, Ethan loved being my puppy for a day. He barked, whimpered for treats, and pushed his head against my hand to let me know when he wanted to be petted. Best of all, I didn’t have to worry about losing him in the throng. Sitting on the Trailways bus with Ethan asleep against me, I thought about the brown bag hidden in my childhood closet. Would I have attached so many negative feelings to the brace if my parents had been open and playful about it? It occurred to me that if they hadn’t been so hush-hush around disability, maybe I wouldn’t have felt so secretly ashamed.
Years pass. On this day, I will ride a train rather than a bus. My traveling companion is my boyfriend, Dan, who is blind. First, I wait while he calls his dog over to be put in harness. Dee wags his tail while Dan slips the harness onto his back and buckles the strap. I remember Ethan, as my puppy for a day, joyfully wearing his leash. Happily, in his harness, Dee leads us out of the house.
The harness is thick utilitarian straps and a handle. It is an assistive device no more beautiful than the brace I wore at night. But Dee is adorable. In fact, Dee is a babe-magnet. (Since guide dogs are not supposed to be petted or acknowledged while on duty, I have the gleeful job of telling beautiful women who approach my boyfriend to coo over his dog, “hands off.”)
When we get on the train, I notice a woman, a few seats back, smiling at us. No, not just smiling. Beaming. I wonder if she knows Dan; if maybe, she’ll approach us before we get off the train. We exit with the crowd at Thirtieth Street in Philadelphia. I see the woman from our train up ahead. And now I know why she lit up when she saw us. She is walking with her teenage daughter who has a quirky, off kilter C.P. walk not unlike mine. Prattling on with her mom, the girl is lovely. Bouncy and confident, her disability not a detraction at all.
Also in the crowd are a couple of friends heading to or from a yoga class. They carry their rolled up mats, and one shoulders a mesh bag through which I see a strap and a soft, brightly colored block. I recognize them as yoga props, adaptive equipment that even strong, athletic able-bodied people use in order to open further into their poses, in order to stretch. And isn’t that the function of tools such as wheelchairs, crutches and guide dogs? To allow those of us with physical limitations to stretch? To give us the option to lead the biggest lives we can?
When I think of it that way, I see they are beautiful things.