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The Goods and Bads of Living with Cerebral Palsy

By Kylie Moore

If you’ve read any of my posts before, you’re likely familiar with me; I’m Kylie, and I live with a condition called cerebral palsy. While presenting its challenges this condition has significantly shaped both my personal and professional identity. In honor of Cerebral Palsy Awareness Month, observed every March, I want to talk about Cerebral Palsy and how it has impacted my life and career path.

What is Cerebral Palsy?

According to the Centers for Disease Control and Prevention (CDC), this is a group of disorders that affect a person’s ability to move and maintain balance and posture. The condition is also commonly called CP for short. It is one of the most common physical and motor disabilities in childhood. CP is usually caused by abnormal brain development or damage to the developing brain, affecting the ability to control muscles. CP can also affect a person’s ability to speak clearly.

There are four main types of CP, which include spastic, dyskinetic, ataxic, and mixed.

People with spastic CP have increased muscle tone and very stiff muscles that may cause their movements to be awkward. Dyskinetic CP causes people to have problems controlling movements in their hands, arms, feet, and legs. These involuntary movements make it difficult for individuals to sit, stand, or walk. People with ataxic CP often have trouble with balance and coordination and might be unsteady when they walk.

Sometimes, people can have a combination of the different types of CP. The most common type of mixed CP is spastic-dyskinetic. CP affects people differently, and no two cases are the same.

Living with Cerebral Palsy

Transitioning back to my personal story, I have Dyskinetic CP, a condition I’ve lived with since birth. Complications during my delivery resulted in brain damage due to a lack of oxygen, ultimately leading to cerebral palsy. Having CP makes it challenging for me to control my body and movements, leading me to rely on a power wheelchair for mobility.

Having CP makes it extremely difficult for me to control my body and my movements. I cannot walk, so I use a power wheelchair to get around. I need assistance with most daily tasks, such as showering, dressing, eating, and using the restroom. Even though I need help with several things, I always try to be independent and do as much as possible for myself.

One of the most complex challenges that I face is my speech. It is challenging for me to speak clearly and for people to understand me if they do not know me well. My speech impediment can be very difficult to deal with. Sometimes, I feel like people may judge me or think I am intellectually inferior because of how my speech sounds. I have overcome this by constantly presenting in front of large audiences as part of my job as a disability advocate. Over the years, I have been able to find different assistive technologies that make it easier for me to communicate with people I am not familiar with.

When attending the SourceAmerica Grassroots Advocacy Conference, I was nervous that my speech would affect my congressional meetings. Speaking to legislators on Capitol Hill can be nerve-wracking. It is even scarier if you have a speech impediment. I wanted to convey my message to my legislators as clearly as possible but was concerned that my speech would prevent me from accomplishing that. I also knew it would be challenging to get my point across in a short period. To get my message across, my friend Brooke helped me find a text-to-speech app on my phone, that could read what I wanted to say out loud. This app was handy to me in my congressional meetings. I could briefly introduce myself to my legislators using my own voice and then use the app to deliver the rest of my message.  See how it works in the video below.

Even though I find assistive technology helpful, I still wish I could speak clearly. My speech is one of the hardest things I face daily because of having CP. Still, it has also made me stronger because I have learned to be patient with others and myself.

Living with CP has also affected my personal life as well. I must rely on others to help me with most of my needs. I am very grateful to have two amazing parents who support me in everything I do. I also have a strong group of close friends who truly understand me. Not only do I rely on my family and friends to help me with my personal needs, but they are also my primary source of transportation. It can sometimes be challenging to depend on others to get me places I need to go. I often must plan things around other’s schedules and plan things far in advance. There are times when it can be frustrating to have CP. I wish I did not have to rely on others to do so many things and could do more for myself, but I am grateful for my support system.

Having CP has also had a significant impact on my career path. I have always wanted to make a difference in other people’s lives from an early age. In college, I did volunteer work and an internship working with other people with disabilities. Through these experiences, I learned more about advocacy and the disability community in Georgia. I started to realize that I could use CP to my advantage by becoming an advocate and sharing my story and experiences with others who have disabilities. My disability gives me credibility in my career as an advocate because I understand what other people with disabilities are going through daily. I also believe I have a good understanding of what people with disabilities want and need to be successful in their lives. When teaching my self-advocacy classes, I find that having a disability helps me build rapport with my students because we have something in common from the start, which helps them relate to me and trust what I am saying. I am genuinely grateful that having CP influenced my employment path and led me to a career I love.

There are advantages and disadvantages to having CP. Many different types of CP affect people in many ways. Having CP affects the way my body, muscles, and speech work. Even though I must rely on others for my daily tasks, I am thankful to have an incredible family and friends support system. My disability was the primary reason I wanted to become an advocate so I could help others who were in similar situations. I always try to find ways to use my disability to my advantage and see the positive in every situation.

I’m Kylie Moore, a 35-year-old from Roswell, Georgia, living with Cerebral Palsy. I’ve dedicated my career to advocating for the disability community, creating self-advocacy programs, and serving on boards. I founded the Ambassador Program at AADD, received the Tom Miller National Advocacy Award in 2020, and now advise Arts InCommunity. When not teaching, I can be found watching the Georgia Bulldogs or my beloved New England Patriots play football or participating in wheelchair sports.

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