By Susan Lutz
I stopped the cart and wanted to laugh. I wanted to cry.
“My brother has three retarded kids,” a man said as my son, Addison, and I passed him in the canned food section of the grocery store. Addison was sitting in a fire truck shopping cart meant for toddlers. He was eight. He tried to beep the horn, but it didn’t work.
I paused. I turned to look at the man. He smiled and told me he really felt for me. “My brother has three of them,” he said again, as if we were talking about cars.
I made a sound I can only describe as a sputtering chuckle. Should I smile and say thank you? Did he just give me a compliment? Or was it an insult? Retarded. I cringe at the sound of it. The tone is harsh. Retarded. Images appear in my head of poor, sad victims.
I don’t always have time for an educational lesson on the proper use of the “R” word. Campaigns run across television and the Internet to practice compassion and an end to the “R” word, that unspeakable and degrading term used to refer to people with disabilities. Retarded. I looked at the man’s weathered face. I guessed he was in his late sixties. His cart didn’t have much in it. He just kept staring at us. I felt like my feet were glued to the floor.
When Addison was born, I was given a list of characteristics that were consistent with t21, or Down syndrome: low muscle tone, round flat face, almond-shaped eyes, a palmar crease, eye folds, mental retardation, small ears and flat nape of neck. The “R” word nestled in the group like dish soap on a grocery list. There’s always room to educate, but sometimes it feels preachy and weird. Sometimes even I use the “R” word. Medical or educational moments exist when I can find no substitute. I guess the problem comes with the intent.
“Leben! Leben! Leben!” Addison yelled. He pointed to the sign above his head. We had skipped aisle eleven and gone straight to aisle nine. Addison likes things in order.
“It’s a lot of work,” the man said. He looked at the green beans in his hand and then at my son.
“Yeah,” I said. I nodded and offered a half-assed smile.
“Leben!” Addison yelled even louder. I knew the whole store could hear us. I reached for a can of peas and threw it in the cart. I made that strange chuckling laugh again, waved good-bye to the man and moved on.
Before Addison was born, my exposure to children or adults with special needs was almost non-existent. I had an aunt whose left arm was almost useless, a result of the polio she’d had as a child. But I never thought of her as disabled. She was just my aunt who crocheted me a cool poncho in magenta, my favorite color.
Growing up, I’d lived a few blocks away from an apartment complex where adults with disabilities lived. I’d walked by it many times, curious about the apartments inside. But mostly it scared me. When I saw a resident walking towards me, I would cross the street to avoid being too close. I didn’t know what to do, how to listen or what to say. We were neighbors, yet we lived so far away.
In high school, kids wrestled with issues like racism, sexism and classism. Disabilities didn’t even seem to exist. I don’t remember seeing kids like Addison or with any special needs in my school. Where were they? What I didn’t know was that before the 1980s, children with disabilities were largely educated apart from the general population. But it’s not like I wondered about it.
“Leben,” Addison insisted again. I’d have no peace until we went back to eleven. We turned the corner and started down the aisle. Addison pointed to the number on the sign above his head and said with joy and relief in his voice, “Leben.” He clapped. He smiled. Then, he started yelling again. “Coookie,” he said, pointing to the Sesame Street characters on the shelf. “Coookie Mosster!”
“Let’s try these,” I said, showing him some crackers.
“No,” he said. He crossed his arms in front of his chest. I pushed the cart forward and grabbed a gluten-free, cheaper brand of cookies and quickly opened them.
“Want one?” I asked. He held out his hand. I broke the cookies in half and fed him until we were finished shopping. The store was crowded. We were third in line to check out. Addison stuck his head out of the fire truck grocery cart and looked back at me. A string of chocolate-laced saliva dribbled down his chin. A ring of black crumbs circled his lips.
“Rink!” he yelled with a mouthful of un-swallowed cookies. Like those moments before a car crash, everything for me slowed down. I felt the heat of everyone staring at me. Addison could throw a tantrum, scream maybe throw something at the lady in front of us. In a second, I might lose control.
“Your drink is in the car,” I said. I looked in my pockets for a napkin and, finding nothing, wiped his face with my sleeve.
When Addison was a baby and a toddler, he was adorable. His cheeks were round and squeezable. It was easy to imagine little wings sprouting out of his back. More than once, strangers told me I had been gifted an angel from heaven. When his pudgy hands and arms reached out to hug anyone he could find, people reached back. He will turn nine this year. He is taller and freakishly strong. When he grabs hold of one of my fingers, he can pull me to the floor like some ancient, secret martial arts move. The low muscle tone and flexibility that kept him from walking until he was three has become a useful tool of agility and freedom. He can squirm into small spaces and disappear in a store in seconds. And he’s fast. If he gets a good lead, he’s hard for me to catch.
“Your drink is in the car,” I told him again.
“Rink!” he said again. I gave him another cookie. The woman in front of us finished putting her items on the conveyer belt. She peered at Addison quickly, put a divider between our groceries and walked to the end of the lane.
People sometimes stare, smile or whisper when we enter a room. I know they often do not know what to say. Perhaps they tolerate or pity us. Sometimes they cross the street or walk in the other direction. Addison is rarely called an angel anymore. At times, it seems like he has traded in his wings for a pitchfork. But I still take him everywhere. By doing normal things, we become a regular sight in the world. Splayed open for all to see, we walk blemished, exposed, loud, awkward and different.
“Out, Mommy,” Addison said. He unfolded his legs from the shopping cart, stepped out and ran to the other side of the lane next to the cash register to help the cashier. He nestled between the woman and the scanner, grabbing items and waiting for the beep.
“Get back here,” I told him.
“It’s OK,” said the cashier. She was older than me and ran her register with confidence. Addison held the can of peas over the scanner until he heard a beep. He picked up a cucumber and waved it.
“Hey,” he said when he heard no beep.
“Get back over here, Addison,” I said, but I didn’t really mean it. I wanted him to have this moment of control. These were brilliant, tiny flashes of light that made a huge difference in his life. I wanted him to grab it and enjoy. I felt a relief from the constant struggle of moving forward.
“No worries,” said the cashier. Between managing my son and running her register, she looked up for a second and waved her free hand at me. I knew she understood. I stepped back and waited at the end of the aisle with my cloth grocery bags.
“Thank you,” I said quietly. Addison grabbed another cucumber.
“Wait,” the cashier said. “You have to put those here.” They set the vegetables on the scale. She pushed a few buttons. “You’re good at this,” she told him. “Do you want a sticker?” she asked when they were finished.
“Yes!” he said. He pushed back his sleeve and she stuck a happy face to the back of his hand. He looked at it, smiled and ran back into the fire truck. I gazed out the big glass windows of the store and saw the man who’d called my son retarded walk to his car. He carried a single bag. He swung his scarf around his neck. It was cold. I put the last of the bags into my cart. The cashier handed me the receipt.
“Thank you,” I said.
“He’s a great helper,” she said. She waved goodbye to Addison.
“Bye,” he said. He tried to beep the horn again.
“Do you need help to your car?” she asked.
“No, but thank you,” I said. “I truly thank you.” I pushed the cart forward and moved on.
Author’s note: The grocery store this story takes place in was small. The narrow aisles forced carts and people to
negotiate a tight squeeze. More than a year later, that store is gone and has been replaced by a big, open space with aisles I can navigate with ease. I am especially thrilled that they now have special needs shopping carts I can buckle Addison into. The cashier in this story was a real hero to me, and the store deserves recognition for employing such helpful, wonderful people.
Susan Lutz is a writer, filmmaker and photographer. Her film, “The Coffee Dance,” was awarded The Pollination Grant in 2014. She teaches filmmaking and is an editor for the Organic page at allthingshealing.com. She writes about special needs and single parenting at nomorenicegirl.com.