Advocacy Is Key:

CW: Depression

Over the years of living with Cerebral Palsy, I’ve learned that advocacy is essential. Growing up, my parents were my greatest advocates, and they later helped me learn self-advocacy skills. My parents were the ones who advocated for me in school, at doctor’s appointments, and at my many physical therapy appointments. I am forever grateful to them for advocating for me when they needed to.

In school, advocacy was essential for me to learn. Luckily, my teachers understood my disability and limitations. My teachers worked with me to adapt the curriculum and provide accommodations. In high school, my math teacher had me use a graphing calculator when I took geometry. In anatomy and physiology, my teacher had me identify the body parts on a skeleton after discovering that I had difficulty labeling a diagram on paper. I am grateful that my teachers worked with me so I could access the curriculum.

As I’ve entered adulthood, I’ve learned how to better advocate for myself. I can attend medical appointments and discuss my healthcare independently. This is particularly important when it comes to my medications. In 2020, I began taking an antidepressant which has helped ease the symptoms of my depression. This wasn’t an easy decision to make, but it was necessary.

I’ve also had to advocate for myself during PT appointments. At my physical therapy clinic last year, for example, I worked with an intern. Because the intern strained my muscles, I apologized to the lead physical therapist. Because I didn’t want to hurt the intern’s feelings, I waited until she left the room. My PT said that providing feedback and indicating discomfort is totally fine. I didn’t want to offend the intern.

Advocacy has been necessary in achieving my goals as well. When I began thinking about living independently, I had to do extensive research and ask lots of questions. I couldn’t move into just any apartment. Eventually, I was able to find an apartment that worked for me, and I moved out in 2020. This year, I hope to modify my apartment more to make it more accessible.

Moving out also meant that I’d rely on my PCAs daily. When I work with my PCAs, I have to let them know what I need. They can’t read my mind. My PCAs play a key role in helping me live independently. If I want to go to the grocery store, I have to tell them that I want to go there. If I want them to change my bedsheets, I ask politely if they will do this for me. Treating PCAs with respect is important.

I have been looking for work since 2019, and I have been unsuccessful. I’ve filled out hundreds of job applications in three years. I have recently been working with my local MassHire Career Center to find a job. During my initial appointment last month, I had to make sure the staff understood my needs and goals. Due to my CP, I cannot work certain types of jobs. I needed the career center to understand this. I didn’t want them to find me a job in construction or fast food.

Advocacy can be difficult for someone with CP. Advocating for myself, on the other hand, has taught me to be tenacious. I feel proud when I advocate for myself. It takes considerable time and effort, but it usually pays off. In the future, I hope to advocate for other people with disabilities, too, because all people with disabilities deserve to live their lives to the fullest.

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