By Julie Weissman-Steinbaugh
Every year, our family escaped the snowy New York winters to spend a few weeks in Jamaica. Mom and Dad avoided other tourists by grocery shopping at the local open-air market. There were few children with platinum blonde hair and light skin like ours.
“Beep, beep,” I hollered without being heard.
A group of people wearing colorful clothing parted as Dad pushed my wheelchair through the crowd. Three dark skinned teenagers sat on the dirt floor playing Bread’s “Make It with You” on steel drums and maracas. Dad dropped a few coins in their rusty tin cannister as we passed.
“It’s so cool that we’re old enough to come shopping with Mommy and Daddy,” I said, smiling at my brother, Alan, who was walking beside me holding onto the armrest of my wheelchair.
“Yeah, David is only two and he has to stay home,” Alan gloated.
My parents had three children in two-and-a-half years. I am the eldest, but Alan and I are almost twins, born eleven months apart.
Dad pushed my wheelchair as we explored rows and rows of merchants who sold everything from baskets to zucchini. Mom crossed off items on her list and plopped them into elaborately decorated handmade straw shopping baskets.
“Connie, look at that papaya — I bet they came off the tree this morning. Let’s pick up a few,” Dad said.
We stopped in front of a stall of oval yellow and dark green fruit stacked as high as I could see. I tilted my head upward and my neck scraped the edge of the vinyl sling backrest. My bone thin arms and legs swung wildly.
“Good afternoon, these look incredibly fresh.” Dad reached out to squeeze the fruit.
“What’s wrong with her?” the merchant asked in a thick Jamaican accent.
“Nothing, Julie is handicapped. How much do you want for these?”
My parents were used to these types of conversations. Although cerebral palsy is a lifetime condition, people who lived on the island often suggested ways to cure me. My favorite was soursop milkshakes, made with a tropical fruit that was believed to have medicinal benefits.
“I’m sorry your baby was born that way.” The merchant stared down at me.
Shoppers crammed together, waiting for their turn. My right arm launched without intention, tapping the stranger’s leg that pressed into me.
The woman whose leg I tapped looked down and clicked her tongue — “Poor, poor baby.”
“This is my daughter Julie, and her brother, Alan,” Mom interjected. She handed Dad a basket.
The woman kept staring. “I’m so sorry. My cousin is like that. Every day we bury him in sand up to his armpits and now he can walk.”
With few resources, the family had substituted the beach for an apparatus to enable their relative to bear his own weight.
“I don’t want to be buried,” I whimpered, tears in my eyes.
“We’re burying Julie! Can I help?” Alan jumped with excitement.
“No. Julie is not being buried. Calm down.” Mom’s firm voice caught our attention.
“We’ll take eight papayas,” Dad said, holding the basket up to be loaded.
As we moved away, I began to cry, “I’m not a baby. Why are they calling me that? I never want to come back here.”
Dad pushed me out of the way of foot traffic. I shook so much that I slipped down my seat, my seatbelt now around my chin. Dad lifted me, pulling my head from the gap between the back and seat of my wheelchair. He wiped my tear covered face with the white handkerchief he always tucked into his back pocket.
“Julie, there is no need to act like this,” Mom said. “You are fine. They are curious about you, and they mean well.”
I have cerebral palsy. My body is in constant motion. One moment my head is upright, and the next it tilts awkwardly to the left and shakes. I cannot walk without assistance. I speak with an unusual accent. Stress or sleep deprivation can make me more difficult to understand because my muscles tighten; my diaphragm pulls in and refuses to release. In these moments the words will not come out as smoothly as they play in my brain.
Of course, I have other traits also — hair, now dyed red in my fifties. Blue eyes. Tits. The average able-bodied stranger, though, only notices the ways my body is different from theirs. I am accustomed to being seen this way; it’s my normal.
The obstetrician did not check my position in the birth canal. My tooshie entered the world before my head and I could not breathe. I was an exquisite shade of purple. Oxygen did not feed my brain, that was clear, but there was no way to know the extent of disability I would experience in the future. My survival was not certain. Instead of going home to a freshly painted nursery, I was sent to what now would be called a Neonatal Intensive Care Unit (NICU).
I don’t have too many early memories of being singled out for being disabled. That must be why the shopping trip to the Jamaican market was memorable. Often, I was surrounded by children and adults who saw past my disability. My family vacationed in the same hotel year after year. The staff’s familiarity with my needs enabled Mom and Dad to get a respite from parenting.
“You kids be careful walking to the dining room. Mommy and I will be there soon.” Dad watched his three tow-headed children going down the hall of the Jolly Beach Resort. We wore t-shirts over our bathing suits, ready for another day at the beach.
It was seven o’clock in the morning and the only other people wandering the hallways were housekeeping staff getting ready for the day. The walkway to the dining room was an open-air, covered path. On one side was the sandy beach and the Caribbean Sea. Tall palm trees with basketball-sized coconuts lined the walkway to our right.
The aroma of fresh cooked bacon told me that we were getting closer to our destination. My brothers ran ahead, leaving me to catch up.
“Wait for me,” I yelled as I steered my wheelchair backwards with my feet.
“Come on, Julie! Windy is waiting for us.” Alan stood at the entrance of the dining room, which was festively decorated for Christmas. Windy, one of the waiters, stood holding David’s hand with one hand and menus in the other.
“Good morning. I have a table set up for you right over here,” Windy said.
Our table was next to a rectangular-shaped opening facing the beach, framed by hibiscus and canna lily plants. Birds flew around, unaware of the distinction between indoors and outdoors. There were three wicker backed chairs and four settings at the table. Alan stood behind my wheelchair and guided me into the empty space.
“What would you like to drink?” Windy handed us each a menu as he took our orders.
At ages nine, eight, and seven, we felt very grown-up, eating breakfast without our parents. Alan and David sat on their knees so that they could reach the table. They moved their shiny Matchbox cars along the tabletop.
“You’re gonna knock something over. Take the cars off the table,” I said.
“You’re not my mother,” David whined.
“Yeah, stop telling us what to do,” Alan agreed.
“I’m telling on both of you. Windy will take your toys away. Here he comes,” I said.
Alan and David quickly hid their cars under their legs.
“Who had the orange juice?” Windy approached, a large tray with three cups and straws balanced in his hand. “What would you like to eat this morning?”
The boys each ordered their breakfast and I waited for my turn. “I’ll have French toast.”
Windy stopped writing in his notepad and looked down at me. “What do you want to eat, Julie?”
“She wants French toast,” Alan repeated matter-of-factly. People often did not understand my speech and my brothers filled the role of translator.
A short while later, Windy placed our plates on the table. Pulling a chair next to me, he unwrapped the silverware and tucked the linen napkin into my shirt. “Ready to eat?”
Children develop their sense of identity through relationships and experiences, family interactions, and their environment. For me, the extent to which I felt included was highly dependent on how others reacted to me. I experienced two extremes; either I was excluded completely, or I was included to such an extent that my disability was not a barrier. Figuring out where I belonged became a never-ending struggle.
“American Airlines Flight #7098, Phoenix to New York’s JFK, now requests all passengers who need any extra assistance to kindly preboard.” A crackly voice came out of the intercom, competing with babies’ cries, conversations, and Journey’s “Open Arms” in the background.
“I think that’s your flight.” Lynda, my former school aide, stood up from her seat and grabbed my boarding pass from her large brown purse. “When you come next year, let’s go to the Grand Canyon.”
It had been two years since Lynda moved back to Arizona. She was the only competent school aide I ever had, and my parents thought of her as family. I looked forward to spring break because Lynda, her husband, and I went on adventures, and I was allowed to be a teenager in ways my daily routine did not allow.
As Lynda pushed me towards the podium, I noticed people were watching us with great curiosity. Successfully navigating the obstacle course of bags and people waiting to board, we reached the gate. An agent asked for my boarding pass and offered help. After allowing us to say our goodbyes, he pushed me down the steep ramp to the entrance of the plane. When we arrived at my seat, he helped me with my seatbelt and began to put my LeSportsac in the cubby above me.
“Can you please give me my book?” I enunciated each word slowly so that he could understand what I needed.
As he unzipped my bag and handed me my book, he bent down to explain that in case of an emergency, the flight crew would come and carry me out on the blanket I sat on.
I turned my head to see whom I was sitting next to. The woman had gray hair, an orange tweed skirt, and a matching blazer. I noticed a big diamond ring on her age spotted finger, and she smelled like she bathed in Calvin Klein’s “Obsession.” Next to her was a very thin man wearing gray slacks, a yellow button-up shirt, and a light blue cardigan sweater. He sat quietly looking straight out of the window.
“Are you going home?” I asked.
Instead of answering, the woman reached up and pushed the call button above her head. She muttered something to her husband and kept her gaze straight ahead.
I watched my neighbor. I guess she doesn’t want to talk. I wonder if she understood me. Oh well, it looks like I won’t be chatting my way home. This trip went too fast. I wish Lynda lived in New York. I don’t have friends to hang out and go places like I do with her. I hate leaving.
A few minutes later, a woman approached with a well-trained smile. She was wearing a navy-blue dress and a matching jacket with two white stripes on the cuffs and gold wings pinned to her right collar. According to the tag on her left shoulder her name was Laura. “Is there something wrong?” Laura reached up and pushed the button again to turn off the call light.
“Stewardess,” the woman beside me yelled, “My husband is upset. He has a heart condition and can’t take the strain of sitting next to her. Look at her. The girl is probably going to hit me with her swinging arm.” The husband sat with his head down, staring at his bony hands in his lap.
“I’ll see what I can do.” Laura patted me on the shoulder as she walked away.
When the woman pushed the call button, I assumed she wanted a pillow.
I knew that my disability made people uncomfortable. Some people gave me odd looks or kept their distance. Most people simply ignored me. Others were curious that a teenager with a very visible disability was flying alone. However, this woman was frantic because I sat beside her. I had never encountered this type of prejudice. Her husband was not the one I bothered — in the ten minutes since I took my seat, the man had not said one word. He hasn’t looked up from his lap once. I’d be surprised if he even knows that I am here. I fumed.
I did not have the confidence to say what I might today — “Lady, you are being ridiculous. What are you afraid of? You can’t catch CP. I have every right to be here.” As a teenager I felt intimidated by this adult woman.
Down the aisle I saw Laura talking to a man whom I didn’t recognize. They were looking in my direction, Laura was waving her hand. I sat there wishing my eavesdropping skills worked from six aisles away.
The woman continued huffing. “This is totally unacceptable,” she muttered, not very quietly. Her husband patted her leg and told her that everything was going to work out. After what seemed to be forever, the man I did not recognize came down the aisle. He was wearing the same uniform as Laura, but he wore a lanyard and an official-looking card.
“Hi Julie. It appears that we have a little problem. Would you mind if we moved you to first class?” he asked, kneeling to look at me.
“Absolutely not,” I said, grinning. I glared at the woman beside me, and said, “Thanks so much, ma’am.” The crew member gathered me into his arms and carried me to the land of cushy seats and China plates.
The woman’s hurtful comments were soon forgotten. I could not believe my luck. My new seat was twice the size of the one I was removed from. There was no chance I would accidentally swipe my neighbor with my spasming arm. The aroma of the meal for first-class passengers made my stomach growl.
“Hello Julie, I’m Monique. After takeoff, would you like a Coke?” A woman wearing the same uniform as Laura crouched down beside me.
“Yes, but I can’t feed myself,” I replied, quickly grabbing my book before it slid off my lap.
Monique looked around the cabin. “We’re not very busy today. I’ll see what I…”
“Stewards and stewardesses, please take your seats,” the captain’s voice boomed through the speaker.
Monique stood up and walked towards the jump seat at the front of the plane. As she left, she turned and said, “Julie, think about what you want to drink.”
The airlines didn’t provide extra crew to assist me. I knew that there wasn’t any guarantee that I would be able to eat or drink during the flight. In the past, a passenger sometimes helped me, but I normally waited until I got to my destination. This flight was different. Monique was at ease with me. She had been a physical therapist before becoming a flight attendant. She fed me the scrumptious steak dinner and even added extra butterscotch syrup to my sundae for dessert.
Almost five hours later, Monique helped buckle me into an airport wheelchair that could have fit three people my size. We met my parents in the terminal.
“Mom, Dad, you’ll never guess what happened! I got to fly in first class!” I squealed. My body shook with excitement. “I even ate dinner and a sundae. There was this lady who didn’t want to sit next to me. She claimed that I upset her husband. You’ll never believe it, but the stewardess used to be a physical therapist. She had no problems understanding me. This was the best flight ever!”
“I can’t wait ‘til next week. I get to bring my motorized wheelchair to school, and you won’t have to push me anywhere,” I said excitedly to my aide, Marilyn. “The bus company finally figured out how to tie it down safely. I still don’t understand why they made such a big deal about my new chair.”
“I think that yours is the first motorized wheelchair they’ve transported. I have a feeling I’m going to need roller skates to keep up with you,” Marilyn joked.
“In Berkeley, everyone has electric wheelchairs, and they don’t seem to have any trouble getting where they need to go.”
I was the first and only physically disabled student in my high school. I was tired of trailblazing. After graduation, I was heading to California to begin my freshman year at U.C. Berkeley. The independent living movement for people with disabilities started in Berkeley, and I was looking forward to not being the odd person out.
Marilyn and I sat in the almost deserted school cafeteria. Roslyn High had an open campus policy allowing students to break out into town for lunch, but the most direct route crossed five flights of steep steps. Travel by wheelchair was impossible, and an accessible path would not have made a difference for me since school policy forbade staff from accompanying students off the grounds.
Four years earlier, my friend Margie and I had been finishing our lunch when a voice came over the loudspeaker: “Attention, all freshman. There will be an assembly in the auditorium next period. Please proceed there promptly.”
“I guess I won’t have math today,” I said.
“Julie, do you want anything more to eat?” my aide asked as she piled my half-eaten lunch on the institutional-type tray.
“No, that was gross.” I stuck my tongue out and began gagging for dramatic effect.
“I’m glad my mom made me ham and cheese.” Margie shoved the empty sandwich baggie and juice box into her backpack. “Let’s sit together at the assembly.”
“Definitely. I wonder what this will be about.” I reached down to disengage my brakes. “We’ll meet you there.”
My aide looked confused. “What do you mean? I’m going with you.”
“You can meet us at the assembly. Julie and I have to chat.” Margie slung her backpack over her shoulder, and pulled me away from the table.
“Wait. No. I’ve been told that students can’t push your wheelchair. Only staff,” my aide said, too firmly.
“No way,” Margie and I screeched in unison.
“Those are the rules. We’d better get going.” My aide took control of my wheelchair.
There had been no such rule in junior high. Entering high school meant contending with a different and less progressive administration. It seemed Margie and I would have fewer opportunities to socialize away from my aide.
“Mom, I hate high school.” I burst into tears as soon as the bus driver wheeled me to our front door. “My stupid aide said that only adults can push my wheelchair. How am I supposed to hang out with Margie?”
“Let’s get you inside and I’ll call the principal. This must be a mistake.”
My aide was correct. The high school administrators were more concerned about liability than my successful inclusion into the school community. It took over a week for papers to be signed granting Margie permission to wheel me away from my aide.
At home, I wheeled my chair backwards with my feet skillfully. However, I couldn’t keep pace with agile teens who crammed the school’s hallways. On the rare occasions when I tried to wheel myself, students heckled — “Cripple.”
When Margie and her family moved away midway through ninth grade, I lost an important connection with my peers. Today’s educators often pair students with disabilities and able-bodied students; it is common to see students wheeling their classmates. However, in 1979, facilitating friendships was not a priority. If my aide took her lunch break, I was sent to the library. I rarely questioned the reasoning behind this. It just was.
My senior year, a week after Marilyn joked about purchasing roller skates, I took my new wheelchair to school for the first time.
“That’s pretty slick,” my bus driver said as she stored the ramp. “Try not to run anyone over. I’ll see you later.”
“Cool chair. How fast can you go?” a classmate asked as we rushed into Ms. Soto’s class.
“Thanks. The manual says it can go up to five miles an hour, but I haven’t tested it,” I said, smiling broadly.
I freely roamed the hallways without a middle-aged chaperon at my side. The novelty of my wheelchair also encouraged spontaneous conversation with other students, conversations that had not happened before. Although I still did not get invitations to do things outside school, I felt included and slightly more at ease my last semester of high school.
“You might want to figure out where Hillel is.” Mom’s tone was more a command than a suggestion. “I’ll call again tomorrow. Good luck with that English assignment.”
Mom’s mostly one-sided conversation lasted for over twenty minutes, and I was ready to leave.
“OK. I’ve gotta go,” I replied, and pressed the phone’s speaker button before Mom said any more.
Parents like mine feared the high rate of inter-marriage between Jews and non-Jews. When sending their child off to college, parents wanted their children to retain their Jewish identities. Hillel International provided religious and social programming to do just that.
I felt obligated to search for Berkeley’s Hillel, but I wasn’t sure how involved I wanted to get. At home, our family’s calendar was filled with Jewish activities, and there were few Saturday mornings that we didn’t go to synagogue. But I was let down by my Jewish community in Roslyn. The teens whom I had known from religious school ignored me when we entered the hallways of our public high school. Worse yet, they would talk about parties I was never invited to when they knew I was listening.
The adults in the community were no better. The leaders of our synagogue’s United Synagogue Youth (USY) group barred me from participating because they wouldn’t accommodate my needs. They blamed a lack of staffing to support me. Eventually a line was added to the synagogue’s budget to hire someone to create and staff a separate group for Jewish disabled teenagers. It had an awful name, Physically Handicapped Abled Bodied (PHAB). I think there might have been five members; I was the only teen not attending a segregated school.
Most weeks, we had our own activities, but were allowed to join the USYers for special events like dances. Joint events heightened my loneliness. I wanted my able-bodied classmates to see our similarities, but it felt impossible while surrounded by kids with very visible disabilities.
Despite my doubts, I headed towards Berkely’s Hillel. It was only my third week at college and the freedom to independently travel anywhere was still novel. My 0.3-mile route took me up Haste Street, left on College Avenue, and finally a right on Bancroft Avenue. It seemed to take forever as I maneuvered my way over uneven sidewalks, and through shoals of students rushing to class.
I finally spotted a blue and gold banner that read, “Welcome to Hillel.” I was shocked to find thirty steps between me and the front door. There was no sign of an alternative entrance. In New York, this was not unusual. Sitting there, I realized that I hadn’t encountered a barrier like this since arriving in Berkeley.
I can’t get in. I guess I won’t be joining. My parents wanted me to do something Jewish. Being Jewish is important, but it’s impossible to be disabled and included. I’ll tell Mom and Dad that I found Hillel. Maybe they’ll stop bothering me.
I began to slowly back up and turn my wheelchair around and away from the unwelcoming building.
A tall thin man with a short greying beard, wired-rimmed glasses, and a knitted kippah on his balding head stepped out of the building and walked down the stairs. “Hello. Can I help you?”
“I wanted to see what you do, but I can’t get up the stairs.” My throat tightened, and my head fell to the side like a giraffe swinging her neck. “I’m new here. I just moved from New York.”
“Welcome to Berkeley. My name is Marty Ballanoff.” Marty stepped down and leaned forward so that we were eye to eye. “I’m the Rabbi here. What’s your name?”
“I’m Julie,” I struggled to keep my wheelchair from rolling back down the sidewalk. I turned my front wheels so that they hit the bottom step to keep me in place as we spoke.
“We do have a ramp, but it can be hard to find. It’s around the back. Let me show you.” Marty led the way.
Once inside, I followed Marty through a large empty room with tables and chairs stacked in one corner.
“We use this room for large events. Our chapel is behind that folding wall. We only open it up for the High Holidays. Many people who aren’t students use us as their synagogue since Berkeley doesn’t have a Conservative synagogue. Do you want to peak in?”
“Sure,” I nodded.
We left the social hall and entered a busy lobby with posters picturing different sites in Israel on the walls. There was also a metal rack with flyers printed on colorful paper promoting Hillel events.
“Hey Marty, do you happen to know where the card table is? I’m heading out to Sproul to recruit,” a young woman wearing a blue t-shirt with CAL written in golden script yelled across the room.
“Jenny, before you go, I want to introduce you to a new student.” Marty motioned for her to join us and made the introductions.
“Hi, I’m the program director here. We have a lot of fun events planned, including dinner after services this Friday. Can I give you a flyer with the details?” Jenny put a piece of paper on my lap.
“I think Jack was the last to use the table,” Marty answered Jenny’s almost-forgotten question. “Check with him. I’m giving Julie the grand tour.”
“I hope to see you again,” Jenny said as she walked away.
“You should come for Shabbas dinner — my wife is making delicious roasted chicken,” Marty said to me as he opened the door to the chapel.
The chapel was a long rectangular-shaped room with windows that overlooked the fraternity next door. There were rows of theatre-type seating arranged in a U-shape around a table and a freestanding arc where the Torah was kept.
“I thought the Bimah had to be raised,” I said.
“That’s only a minhug or tradition, not a requirement. The space is too small for a platform, but that turned out to be a good thing. The Jacobsons and Judy Huemann are very active here.” Marty sat down in the worn upholstered seat beside me.
“Who’s that?” I turned my wheelchair, so I faced Marty.
“I’m sorry. For a minute I forgot that you are new here. Neil, Denise, and Judy are disability advocates who use wheelchairs. I’ll introduce you. Neil and Judy normally come to Shabbas services on Saturdays. I don’t see Neil’s wife, Denise, as often,” Marty sighed.
Marty told me how Judy complained about the lack of wheelchair access to the raised Bimah used to accommodate the large crowds at High Holiday services. He agreed to figure out a way to add a ramp if she accepted an Aliyah, the honor of being called up while a portion of the Torah is read. Since Judy was raised in an Orthodox household where women’s roles in religious life was restricted she had never been called to the Torah, so this was a big deal for her.
“Judy had her very first Aliyah last Rosh Hashona …”
Bong. Bong. Bong. The melodic bells of the Campanile, the campus clock tower, interrupted Marty. I looked at my watch and was surprised it read eleven o’clock.
“Oh, I didn’t realize how late it was. I have a meeting with my adviser in a little while.” I worried about being late, making my body twitch.
“No problem. I’ll walk you out,” Marty stood up.
“Thanks for your time,” I smiled. “I’ll see you on Friday night.”
Recently, I found a shady spot at our local mall to stop and send a text to my daughter. My quiet moment was shattered by the yelling of a security guard from across the street, “She needs help.”
I doubt I would have been noticed if I was sitting on a bench instead of in a wheelchair. An ordinary shopping trip brought me unwanted attention. I stewed over the commotion.
Taking a few calming breaths, I pasted a smile on as another guard approached. He asked if I was alright, and I explained that I was fine. The guard left, allowing me to return to my text.
I have met countless people like the concerned security guard who act out of kindness or a sense of obligation. They were taught that people with disabilities cannot live ordinary lives and therefore should be excluded.
I have had innumerable lessons in belonging. The curriculum focuses on developing an understanding that people’s perceptions are not reflections of my value. Some of my teachers instruct me through unconditional acceptance, while others use prejudice and fear. No matter the technique, my mastery of belonging comes with an understanding of my worthiness. Although being excluded as an adult is as painful as it was in my youth, I now have options to insist on inclusion. Those who taught unconditional acceptance gave me a gift.
Belonging is not always simple. People who initially exclude me might reconsider. People who put me on a pedestal do not see me as an equal. Good natured teasing and sarcasm signal that I’m truly accepted. When I belong, I don’t have to prove myself.
My life is ordinary. I am a daughter. I am a sister. I am a wife. I am a mother. I am an employee. I am a homeowner. I belong.
Julie Weissman-Steinbaugh is a Las Vegas writer who chairs Nevada’s Statewide Independent Living Council. She is a wife and mother who happens to have cerebral palsy. Raised in Roslyn, New York, she was the first physically disabled student to attend her local high school. As an eighth grader, Julie discovered the power of words when her letter to the editor of Newsday against the portrayal of disabled people by the Cerebral Palsy Telethon was published.
At age 18, Julie moved to Berkeley, California, the home of the independent living movement for people with disabilities. She earned her BA in English from the University of California, Berkeley. Julie lives with her husband and teenage daughter.
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