Jennifer Johnson is one of those heroes who hides in plain sight. A native of San Diego, California, she is known for her ambitious athleticism, her wicked sense of humor, and her spirited community activism. As a spokesperson for athetoid cerebral palsy, Jennifer travels to schools and other organizations to promote understanding and awareness of physical disability. A neighbor of Jennifer’s tipped us off that her story would be worth hearing, and we were not disappointed.
When were you diagnosed with cerebral palsy?
My mom was a RN so, three to six months after I was born, she started noticing little things about me: I couldn’t suck on a bottle or roll over. Things that a baby could do, I couldn’t.
My mom knew that I had cerebral palsy but I needed a doctor to diagnose me so my parents could get the help that I needed. My mom took me to four or five doctors. All of them just said I was “slow.”
Jennifer says she had a very bad fever somewhere between the ages of three and six months; this could have contributed to her eventual diagnosis. After encountering several doctors who offered no real help, her mother took her to Children’s Hospital in San Diego, CA where she knew a doctor. He told Jennifer’s mother, “Put her on the floor,” and after a few minutes of observation, confirmed that Jennifer had cerebral palsy. Later, she was diagnosed more specifically with athetoid cerebral palsy.
Also known as dyskinetic cerebral palsy, this variety of CP occurs in 10-20% of all cases. Athetoid means “worm like,” referring to the frequency of slow, writhing, movements that are provoked by involuntary muscle movements in other parts of the body. Athetoid cerebral palsy involves great difficulty in common bodily functions, including walking or talking. For Jennifer, it necessitates speaking with a communication device and living with a caregiver who can assist her throughout daily life.
Tell me a little about your background.
I grew up in Clairemont in San Diego with two sisters and a brother. I am in the middle of my two sisters. My parents treated me the same as my brother and sisters. If they got in trouble, I did too. They accommodated my needs.
What are your memories of growing up with CP?
My parents treated me as normally as they could. I would play with the neighbor kids and they all treated me as a normal kid.
No bad memories that I can think of, except for not being able to speak. I couldn’t really participate in any talking stuff. All I had was an alphabet board that required someone who could spell one letter at a time and keep up with what I was saying.
For much of Jennifer’s life, she was essentially nonverbal. But since she acquired a speech device, she has taken every opportunity to communicate with others about what it means to live with cerebral palsy, and to promote the independence she enjoys in spite of her physical condition. Over the past 15 years, her spunky personality has made her a crowd favorite.
In 2000, I got my first speech device in years, and the sales rep said I would be good at consumer rep. The company benefits from people like me at trade shows because the consumer reps know more about their products.
At these trade shows, I met teachers and different people in San Diego. They would ask for my email address and wanted me to speak to kids about how I grew up or about disabilities. That is how I got into talking to school audiences, from kindergarten through college age.
Do you ever find yourself wishing that you didn’t have CP?
I always tell people, “No, I don’t wish I didn’t have CP.” This is how I was raised. I can’t even think what it would be like if I didn’t have CP. This is who I am and to me, I am normal.
Despite being impaired in speech and movement, Jennifer has physical skills that far outweigh many people without cerebral palsy. She has traveled the world as a record-setting athlete…not in just one sport but in several!
First, I played indoor wheelchair soccer for about 15 years. We traveled all over the U.S. I was also a competitive swimmer for eight or nine years; I hold every U.S. record in my class. I traveled to Argentina twice and the Olympic Training Center in Colorado three times.
Along with her amazing athletic accomplishments, Jennifer is known among friends and colleagues for her direct way of speaking and a razor-sharp wit. In many ways, Jennifer credits her life experience of overcoming physical challenges with making fearless choices, not only in how she addresses others but in how she lives her life.
I am very sarcastic with people. I am very open with people too—that is something new to me. I smile a lot and people see that as a positive thing. If I don’t smile people ask “Oh, what is wrong,” so I smile to let people know that I am approachable and kids like me.
I have come a long way to get where I am at. I can do things by myself somewhat. I go to the gym twice a week at SDSU, and I take the city bus to the gym on my own (if it’s not raining).
What do you hope people understand about CP and/or physical disability after getting to know you?
You cannot catch it; people with CP were born with. I hope people wouldn’t treat anyone with CP any differently then anyone else. We might not respond right away—some CP’s may have to think of their response. Just don’t walk away—that’s disrespectful.
Every month our firm spotlights an inspirational story from someone who has made a positive impact within the cerebral palsy community. If you or someone you know have a story to share, we’d love to hear from you! Email us at: firstname.lastname@example.org.