My Mommy Shakes: Tales of Advocacy

Disney World, 2025

“When I was your age, my mom let me drive her wheelchair.” Jessie pointed at me, her voice matter of fact.

I hadn’t noticed the three sisters, all under the age of four, who stood behind us. But Jessie did. She spotted them staring at me. And, as ever, she had an innate ability to make my differences seem ordinary.

I have cerebral palsy, and my body is always in motion. One moment my head is upright, and the next it tilts awkwardly to the left and shakes. I cannot walk without assistance, so I drive a powered wheelchair with my outstretched left hand while my right arm twitches in a padded trough. My chair also has four-inch-wide U-shaped restraints that engulf my shins and keep my legs from flying off my footrests.

Of course, I also have other traits like dyed red hair, blue eyes, a light complexion, and so on, but the average able-bodied stranger only notices the ways my body is different than theirs.

Jessie and I shared my body for nine months, just the way my mother and I did. However, my tushy left my mom’s womb before my head, presenting me to the world in an exquisite shade of purple. During the last part of labor, oxygen didn’t feed my brain, causing my disability. My parents did an admirable job raising me to ignore other people’s prejudices. But I wasn’t the able-bodied child they envisioned bringing home from the hospital. They had to adjust their expectations.

But Jessie never had to learn to accept my disability. It was inherent for her. She recognized my unique pronunciation and tempo soon after she was born.

Many children are intrigued by my wheelchair and specially equipped van, but, growing up, Jessie thought these things were common.

My daughter experienced ableism when strangers assumed that I was incompetent and asked where her mother was when I sat right beside her. Jessie understood that the world wasn’t always accommodating for my wheelchair. As a toddler she pointed at stairs and said, “Mommy go boom.”

Moraga, 2007

My husband, Mike, and I moved from Berkeley to the pristine town of Moraga shortly after we married. The suburb of San Francisco offered a family-friendly environment and highly regarded schools. Most families had two working parents and employed nannies to care for their children and we were no different.

One day, Whitney, our nanny, came home from the park looking very upset.

“You won’t believe this.” Whitney lifted Jessie out of her carriage and onto my lap. “I overheard a group of nannies saying that they felt sorry for Jessie because her mother was disabled and couldn't take care of her.”

“What the hell?” I hugged Jessie tightly. “Who do they think they are? Should we call CPS on my neighbors because they routinely leave their children with nannies? I don’t even have overnight help, for fuck sake.”

Mike put his hand on my shoulder. The women’s comments intruded into our home, a place where my disability was accepted and accommodated. I spent a lifetime educating people about my abilities. But that day I wasn't prepared to be an advocate again. Tears rolled down my cheeks. As a first-time mom, any criticism hurt deeply. Infuriated that people judged me an unfit mother, I took shallow and rapid breaths. I feared that if we stayed in Moraga, Jessie would confront ableism too often.

Within a year of the nanny incident, we moved back to Berkeley, where I had gone to college. Since the independent living movement for people with disabilities began there in the 70s, I felt more at ease. I wanted to raise my daughter in the city’s inclusive environment. At the bank, Jessie might see a woman who was paralyzed from the waist down. A customer with a breathing tube asked the pharmacist for help locating a product. Café patrons, some disabled and others not, drank coffee and argued about the merits of capitalism. At the park, there were other families with parents who needed attendants for personal care.

Jessie’s Berkeley roots have given her a unique worldview. Among the many toys in her preschool classroom was a set of toy figures with diverse abilities. Jessie assumed sole possession of one particular doll because she sat in a wheelchair and none of the other mommies looked like her. Her friends accepted me almost as easily as Jessie.

And most of the time Jessie just got to be my annoying daughter and most of the time I got to just be her pesky mom.

Walnut Creek, 2009

In the sea of children, my four-year-old was the only girl in the sandbox not dressed in frills. Jessie wore a bright yellow shirt, denim shorts, and sneakers that lit up with each step. A feminist at heart, I dreaded the potential day when my kid would only allow purple and pink in her closet.

One of these summer afternoons, Jessie sat on her knees and explained the importance of a full pail of sand to a girl barely out of the toddler stage. “You take a shovel and pour it like this.”

The child ignored her and stared. “What’s wrong with your mommy?” We were only 25 minutes outside of Berkeley, but wheelchair users were uncommon here.

“She has a disability.” Jessie picked up a neon green plastic shovel. “Now watch me.”

The explanation wasn't enough, so I joined the conversation. “What’s your name?”

“Huh?” Her face crinkled into a puzzled look.

“What’s your –”

“My mommy wants to know your name.” Jessie interrupted, eager to recapture her playmate’s attention.

“Katie.”

“I’m Jessie. Let’s make a princess tower.” She demonstrated the proper technique for building a sandcastle and Katie attempted to scoop up some sand, finally focused on playing again.

Vines of fragrant jasmine separated us from the busy road. Along the pathways were empty metal benches baking in the sun. Most parents vied for the few shady patches on the playground. I positioned myself a few feet from the sandbox with my book on my lap.

“Katie, put your hat on,” the woman next to me said, handing the girl a light pink cap with GAP embroidered in white lettering.

Katie’s shovel fell from her hand when she reached for the cap. As she did, she gave me a curious look.

Jessie handed her a pail. “We’re not done yet.”

I laughed as Jessie began giving orders. Katie’s mother waved her off.

“Your daughter is cute,” I said, trying to start a conversation.

“Thanks.” She adjusted her phone against the glare, and gazed downward and began typing.

Disappointed, my thoughts drifted. Motherhood isn’t the free pass to acceptance that I hoped for. I don’t understand why people continue to exclude me. Doesn’t my daughter who is clearly bright and able-bodied attest to my competence as a woman?

“She has a disability,” Jessie said.

The irritation in her voice drew my attention. The word disability was a part of Jessie's vocabulary, but it wasn’t a word a typical preschooler used. She unknowingly became an educator whenever she met someone new.

A blue jay landed next to the sandbox, but neither kid noticed.

“Girls, look at the pretty bird,” I said.

Jessie scampered out of the sandbox to get a better look. Katie crawled over to the edge. Loose sand rained down from my daughter’s clothes. Their efforts caused the bird to squawk and fly away.

My laughter made it difficult to speak. “Monster, there was a pretty blue bird sitting right there.” I pointed to the spot where the bird landed. “You made too much noise, and she flew away.”

As Jessie turned to climb back into the sandbox, I spotted Katie watching us intently.

“What’s wrong with your mommy?” Katie asked. Her body was suspended over the red wall that was spattered with sand.

Jessie took her foot back out of the sandbox and stepped closer to me. “Mommy, hold your hand out like this.” Jessie held her own hand straight out, demonstrating what she wanted me to do. I was puzzled by this demand, but I was curious to see where it led.

I lifted my left hand off my lap, my fingers curled into a fist. It took a moment to force them to straighten. My engagement ring sparkled in the sun. The effort to mimic Jessie’s hand position caused me to spasm, making wavy motions in the air. I waited for further instructions.

Jessie pointed to me. “See, my mommy shakes. Now, can we please finish our tower?”

I was astounded by Jessie’s concrete explanation of disability. It showed that she not only recognized my differences, but she was able to communicate them in a way that her playmate understood.

I wish gaining acceptance from adults was always as easy as saying, “See, I shake.”

It isn’t.

Despite my best efforts, it’s often impossible for adults to see past their preconceived notions. They assume that I’m incapable of handling any real responsibility and are condescending. I live in a community where my neighbors are genuinely polite to me. They’ll greet me, but a rare few include me in conversations with any substance. I’ve tried to explain cerebral palsy. But ableist attitudes are hard to change.

I, too, tire of fighting ableism. It can be exhausting.

New Orleans, 2018

The thermometer read 99 degrees, but the humidity added another 15 as we made our way through the dense crowds of tourists on Bourbon Street.

“Jessie, do you have to sit on my lap? I can’t see where we are going and I am dying from heat exhaustion,” I complained.

“We made a deal. I agreed to leave the hotel only if I didn’t have to walk.”

My daughter was born to be a lawyer. Everything is a negotiation with her, even a sightseeing excursion.

“What would you do if I wasn’t disabled and I didn’t use a wheelchair?”

The truth was any discomfort I might experience was outweighed by the intimacy of these wheelchair rides. I loved being able to snuggle her as we rolled down the street. Driving faster than my attendant could walk gave us precious mother-daughter bonding time.

When Jessie was a newborn, the two of us fell soundly asleep sitting on the oversized recliner in our bedroom. I cherished the early morning hours when Mike took a shower and left Jessie cuddled next to me in bed. Once my attendant and Jessie’s nanny arrived at eight, I did not have the same sort of privacy with her. I watched and supervised as my husband or my attendant took care of her other physical needs. I felt disconnected and jealous. Ordinarily I didn’t think having cerebral palsy interfered with my quality of life. But my raging hormones pulled me in a different emotional direction and a mother’s instinct to bond felt frustratingly interrupted.

Jessie’s mode of transportation changed as she grew. As an infant, she lay in a baby sling that I wore over my shoulder. Later I buckled her into my seatbelt, and she sat on my lap as I navigated my chair with a joystick. Around the time she was 8, I could barely see over her head, and I realized that she would need to learn to navigate my chair.

I took her to the basketball court at a nearby park. “Jessie, if you want to keep sitting on mommy’s lap, you’ll need to learn to drive.” She was a motivated learner.

Now 12 years old, Jessie steered us towards Café Du Monde to get our nutritious lunch of beignets, her boney butt digging into my lap. Our sweaty skin was sticking together and I regretted my decision to drag her out of our hotel. Jessie seemed unaware of my discomfort as she steered us down the cracked sidewalk.

I was on a roller coaster ride in the dark. Jessie’s back was blocking my view of what was coming. Every time my wheelchair got close to the curb, I got tense and closed my eyes, certain that she was going to steer us over the edge and into oncoming traffic.

“Jessie, don’t get so close to the edge.” I clenched my fists.

“Mom, relax. I know what I’m doing.”

Jessie was a confident and sometimes overconfident wheelchair driver. Like most tweens, she quickly dismissed any input I gave. So I gritted my teeth and silently celebrated when we finally made it to the café.

After lunch we headed back to my hotel.

“Mom, it’s a good thing you have me to be your bodyguard.”

I had absolutely no idea what Jessie was talking about. Sometimes she spoke like a chapter from James Joyce’s A Portrait of the Artist as a Young Man. One sentence did not necessarily follow the next and I pieced the fragments together to figure out the message she was trying to communicate.

“Yea, look at all of your paparazzi staring at us. We can charge them to take pictures of us and get rich.”

The “paparazzi” as Jessie called them, were indeed eyeing us with great curiosity. Neither of us were bothered.

High Point, NC, 2025

Jessie is now attending college in North Carolina, a place where disability isn’t as common. I’ve become accustomed to her outraged calls from across the country. “There’s a new student with CP and when I asked him questions his attendant answered for him. I wasn't talking to her. He should have a communication device.”

I smiled. Jessie assumes that with the proper support people with disabilities can live average lives. And she’s right.

Jessie didn’t learn advocacy the way most of us do, through language or training. She learned it through proximity. What changed over time wasn’t her comfort with my body, but her awareness of how others saw me. Unfortunately, I couldn't protect Jessie from ableism. Nor did I teach her to ignore prejudice, the way my parents taught me. Jessie's awareness isn’t passive. She speaks up. She corrects people. She expects better.

And, still, I wish she didn’t have to so much. I never wake up in the morning and think, “I have cerebral palsy and I'm going to be an activist today.” I’m usually preoccupied with mundane errands or the vet appointment I need to schedule. Likewise, I’m certain that as a college student, my daughter has more pressing concerns than her advocacy. Sometimes my daily routine is interrupted; attitudinal or architectural barriers prohibit me from accomplishing a goal. In these instances, advocacy is our only option.

Jessie and I are advocates. But it’s a role we’d happily give up. And at times we do, but only when surrounded by people who accept disability as an ordinary human experience. They understand that my shakes do not affect the person I am on the inside.

I want people to think, “Jessie's mommy shakes. So what.”