My name is Danielle (she/her). I was born ten weeks premature in 1981. I have mild cerebral palsy (spastic diplegia).
The most common question I got as a child was, “What happened to your legs?” By about third grade, after many conversations with my parents, I had developed a short, straightforward response that my peers could understand: “I was born too early. Some blood vessels in my brain broke, and now my brain can’t tell my legs what to do very well.”
These days, when a child asks “Why do you walk like that?” I say, “I have a disability. This is the way I was born.” That’s usually all the explanation they want or need in the moment.
I generally welcome questions. Do I always feel like talking about my disability? Of course not. But I understand questions and stares. I find myself inclined to stare at new and different things, too. People are curious. I meet the starer’s eyes. I smile. It’s my way of letting them know, I see you too. I’m a person like you. I’m friendly.
I grew up in Redding, California, the youngest of four children. When I was very young, I had AFOs and used a walker. (I also tried forearm crutches and a cane.) I had regular physical therapy, and by first grade, walked unaided. I underwent two surgeries (third and sixth grades). To give you a sense of my abilities in daily life, I never had enough balance/strength/coordination to stand on one foot, squat, or ride a bike (a trike I could do, if my feet were duct taped to the pedals).
Adolescence wasn’t smooth, but I had a small number of very close friends, and they got me through. I was always very nervous about learning to drive. I even took the behind-the-wheel training course twice for extra practice. I was physically able to do it, no need for hand controls. But in the end, it was too much. Too much high-speed multi-tasking at a life-and-death level. I never took my driver’s test, and I decided that someday I would live somewhere walkable with good public transit.
I left high school early and enrolled in the community college near my house. I got my first job(s), as a tutor in the writing center and as classroom support for lower level English classes. Eventually, I transferred to UC Davis and graduated with my BA in English and history in December of 2002.
After college, I moved back home. I spent the of summer 2003 volunteering at an orphanage in Russia. Following that dream fulfillment, I didn’t know what to do with myself, so I went back to the community college and earned an early childhood education certificate. Then I worked as an Americorps literacy volunteer at an elementary school for two years in Redwood City, CA. I stayed on there, working as a preschool teacher and office assistant for two more years. Those final two years in Redwood City was the time I finally felt independent and adult. My own apartment, a full-time job, and the ability to go where I wanted, walking and using all kinds of public transit. But I knew I didn’t want to teach preschool forever. Physically, I didn’t always feel safe getting up and down from the floor and navigating around oblivious two- and three-year-olds, and by the time I made it home, I almost always needed a nap.
In 2008, I moved back to Davis and started the Community Development graduate program. I was always on the fence about going to graduate school. I told myself that if I got in, I would give it a try. I made it about halfway through and was miserable. Dropping out of grad school wasn’t an easy decision, but I just couldn’t make myself go on. In 2010, once again, I was trying to find a job and pay my rent and feeling stuck. Preschool teaching was the only thing I was certified in with job experience, and no one was hiring me. I managed to get a few students as a private tutor, and I reluctantly applied for social security disability benefits.
To my surprise–I was both a little insulted and a lot relieved–I qualified for benefits. With the back pay, I was able to enroll in a copyediting course online through UC Berkeley Extension (and pay my rent). I continued to tutor and look for part-time work. And I found some. I was hired as an English tutor by a local tutoring company. It was so validating to go to an interview and actually be hired, for my skills to be wanted, chosen. Granted, it was only a few hours a week, and the pay was miniscule. But I would make it, now. Soon after I started working there, the director was going on maternity leave and asked if I would take over. And that’s how I found myself with the title of “director,” being paid just the right amount to keep my benefits. I didn’t want to be the director; I didn’t enjoy it and found it stressful, but I did it for a couple years, and continued tutoring there as well.
By 2012, I had finished the copyediting course and found my first novel to edit via advertising my services on craigslist. I had the freedom and the funds to try new things to take care of my aging body, and I took private pilates classes. I was working part-time, tutoring on the side, editing on the other side, and living in a small, walkable town with a good public transit system. It was time to meet someone.
I picked an online dating site, made a profile, and wouldn’t you know? I met my husband. I was thirty-three when we married, two years after we met.
In 2015, I stopped working at the tutoring center and tried to increase my editing work. Freelancing is tough, though, and jobs did not come frequently. I tutored and volunteered for a local organization that paired adults with first- and second-grade “writing buddies.”
In August 2016, I started working part-time for the school district as a reading paraeducator (support person). This job paid just enough that I no longer qualified for benefits. I liked working with elementary-aged kids in small groups, fostering their reading and writing abilities. Maybe this is what I’ll do for the foreseeable future. Maybe I’ve found my good fit, I mused. March 2020 came. For the remainder of the 2020 school year, and for the entire 2020-2021 school year, I was leading phonics and reading groups via distance learning. I barely made it through and did not return in the fall. The person who used to walk a mile, work, walk back, tutor every day after work…? I can’t fathom that anymore. I applied for benefits again, and this time, I was denied. I have to admit, I was shocked. I thought (naively?) that if I qualified before, I would have no trouble being approved again. From social security’s point of view, I was not disabled enough, even though I’d never been more disabled in my life. Perhaps they were becoming stricter. With the increase in remote jobs, it did seem like I should be technically able to work. But being able to work from home, and actually being hired are two different things.
I have experienced a significant decline in energy and ability and a significant increase in pain and fatigue. Now, I use trekking poles whenever I leave the house. Whether this decline is because of aging with cerebral palsy, the pandemic and the effects of sheltering in place, additional health issues, or, more likely, a triple-whammy, I’ll never know for sure.
After appointments with gastroenterology, rheumatology, orthopedics, sports medicine, neurology, pain management, physical medicine and rehabilitation, and my PCP, I reapplied for benefits, still citing summer 2021 as when I “became unable to work.” My application had nothing to do with having celiac disease, so I did not put GI in my medical history, but everything else was applicable to my disability, chronic pain and fatigue. In addition to cerebral palsy, I added neuropathy and arthritis to my diagnoses, and I had a record of seeing specialists, injections, EMGs, MRIs, and trying different pain medications, none of which I had done last time. I submitted my new application in July 2023, and received notice in January 2024 that I had been approved. I felt immense relief, and validation. I had no idea how hard it would be to be approved a second time, as it’s so clear to me that I worked part-time until my *lifelong disability* rendered me no longer able to do so. The government has deemed 22 April 2022 as the time I “became unable to work,” which was a few days after my first steroid injection, though I can’t say whether that was the deciding factor.
For two years in my twenties, I had the ability and energy to work a full-time job. For five years in my thirties, a part-time job with a couple of side hustles. Now, in my forties, I am slowing way down but still want meaningful work. I am back to working from home, tutoring and working as a sensitivity reader.
Land Acknowledgment
I live and work on land that has been the home of Patwin people for thousands of years. Today, there are three federally recognized Patwin tribes: Cachil Dehe Band of Wintun Indians of the Colusa Indian Community, Kletsel Dehe Band of Wintun Indians, and Yocha Dehe Wintun Nation.
The Patwin people have remained committed to the stewardship of this land over many centuries. It has been cherished and protected, as elders have instructed the young through generations. I am honored and grateful to make my home on their traditional lands.
What Happened to Your Legs? 