KEEPING IT REAL: Sarah’s Story, Part I

KEEPING IT REAL: Sarah's Story, Part I
Posted on Thu 13 May 2021

Keeping It Real: Sarah's Story, Part I
We're featuring the first of several question-and-answer style blogs by Sarah Sweeney today.* Make sure you check back for additional posts soon, and in the meantime, you can find her on Faces of CP.

What kind of cerebral palsy do you have?
The form of cerebral palsy that I have is spastic diplegia. I have limited use of my legs, and they are very tight from spasticity, so I use a wheelchair.

How did you get cerebral palsy?
I was born prematurely, at about 27 weeks. The doctors did not deliver me quickly enough because I was so early. This caused a lack of oxygen to my brain, resulting in damage to my primary motor cortex, which is in the frontal lobe of the brain.

How did you feel about cerebral palsy growing up?
I had very mixed feelings about cerebral palsy growing up. I have a very supportive immediate family. As a child my mother put me into many different activities like ballet, horseback riding, skiing, and art classes, just to name a few. She wanted me to experience everything I could, just like any other child. I have two older brothers, and they never treated me any differently than they would have any other younger sibling. To this day, they are some of my greatest supporters. My father was the same way, like my mother; I know that they both had their concerns as all parents do, but they never let it deter me from trying new things or achieving my goals. This mentality, whether it be conscious or unconscious, has helped me become the person that I am today.

A lot of my extended family members have not always been able to understand or accept my cerebral palsy, so that was very difficult for me growing up. It was something that I thought about often, and questioned in different ways during my formative years. Going to school can pose challenges for anyone, but having cerebral palsy and using a wheelchair, added an extra layer of difficulty. I faced a considerable amount of bullying from my peers in elementary and middle school.
They say people fear what they do not understand, that statement is especially true in adolescence. At the time, it was hard for me to make sense of why it was happening. It was not just my peers who had a difficult time accepting me, it was some of the teachers and staff at school as well. I was even referred to as a fire hazard by the principal and vice principal of my first high school, for wanting to participate in after school activities.

Dating is a significant part of growing up during the teenage years. I believe that my cerebral palsy did impede many of the “normal” experiences from happening the way they may have if I did not have it. A lot of people at that age are more into outward appearance and what is popular, rather than getting to know a person for what is on the inside.

Do not get me wrong, I have had so many great experiences because of my cerebral palsy. I had the opportunity to serve on the Statewide Independent Living Council for seven years. The Statewide Independent Living Council is one of the organizations that helps to implement positive changes for people with disabilities on the state and national level. I was able to travel to Washington D.C. and California with people from all across the United States; we were able to come together and have our voices heard. It was also a great opportunity to see what other states were doing to combat various issues that impact people with disabilities.

In my junior year of high school, I moved and was able to finally change schools. Everyone at my new school was very accepting and inclusive. I was able to join the cheerleading squad and participate in other extracurricular activities. Even though I was only there for a short time, I was able to see what true acceptance in high school looked like, and found a place where I felt like I belonged, which can be difficult to do at times. I felt confident enough to walk at my graduation to accept my diploma. That is definitely a memory that I will never forget.

*Sarah's story is part of KEEPING IT REAL — a series of personal stories that will take you deeper into the lives of people with CP. Each person makes different choices based on what works for them, and we’ll showcase that — highlighting what life is like for them on a daily basis, what they care about, and the ways CP impacts them. 

The KEEPING IT REAL blog is intended solely to raise awareness about the varied human experience with cerebral palsy and shouldn't be read or construed to contain any medical advice, medical endorsement, or other endorsement by Cerebral Palsy Alliance Research Foundation. Only you and your doctor know what's best for you. Please consult your doctor for medical advice.

Cerebral Palsy Alliance Research Foundation (CPARF) is excited to announce the appointment of Michael Pearlmutter as its new Executive Director.

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