National Cerebral Palsy Day Tribute

On March 25th, it is National Cerebral Palsy Day, and it was suggested that people should wear green to show awareness and support for people with cerebral palsy. I would admit that I did not know there was a national cerebral palsy day until a new friend I met pointed that out. The irony is not lost on me because I have cerebral palsy. In honor of the national cerebral palsy day, I am reflecting on my experiences and how my cerebral palsy defined me today. I would like to share with you all about my personal experiences growing up with cerebral palsy.

 I was born with cytomegalovirus, and it caused several medical and physical problems. Over time, I have outgrown many of those issues except that I am deaf and was left with hemiplegia cerebral palsy that only affected the right side of my body. My right leg was shorter than my left leg, so my body compensated by the bone structure being inflexible, and my right heel and bottom part of my foot went upward with my toes touching the ground. It was as if I was walking with one women’s heel around me.

I was not completely aware that cerebral palsy can affect our body and mind in several ways until I got older. I could not stand up fully by myself until I was three years old. I remember one of my first memories was trying to walk down the hallway at my first home and keep falling every time. I keep going. I walked with an old-fashioned walker that I carried behind me when it was rolling until I was probably four years old. I wore braces or ankle-foot orthoses on my right leg. I remember when putting on shoes, it was a pain to put it on my brace and I would have to ask my babysitters, my adopted mom, or adults around me to put it on right. It was tough as shoes were not always made for braces. Sometimes my mom would order shoes that were bigger than my regular size so the braces could fit. Sometimes she would request a special shoe that could make it wider as well.

I went to Shriners’ hospital for children when I was in kindergarten. I remember I would skip Mondays for several months to go to Shriners’. It would either be my mom to take me there or my former caretaker. I would show up, have the doctor do some physical therapy or check in the process of my leg, and then either put me on casts to make my leg and feet stay straight like an L shaped. I would either wear braces for a couple of months and then when it gets off, they would make me a brace to fit the size of my feet and leg because I kept growing. I remember every time I visited and had to make a new cast every couple of weeks, one of the doctors would let me choose a variety of colors. My top favorite color then was always blue and green. I have been going to Shriners for years until when I had surgery at age 14 there to help me walk better and to make my right leg and that bottom part of my foot straight most of the time. Afterward, I would not need braces or casts anymore if I keep stretching and doing special exercise methods on my right leg.

I grew up going to physical therapy as well. I would go around three or four times a week. The therapy would be on and off over the years depending on whether I have the cast on my leg or not. I do not remember the exercises that my therapist did, but I did remember that she and other physical therapists did their best to make it fun and engaging. It was always with the braces off. The last time I was in physical therapy, was after the surgery when I was fourteen years old. They said I would have to try physical therapy for one more year and then I would be done. They said it would be different because I would train my muscles to relearn how to walk again. When I woke up after the surgery, I was tired. I did not want to do any physical therapy. When I got out of my bed, moving my leg out and on the floor was exhausting. Even taking my first step on the walker with my physical therapist’s help was quite a workout. After a few steps, I almost collapsed. It was brutal and it took around a week and a half for me to finally start to walk normally. However, it was a different sensation this time. I no longer walk as if I have one heel shoe on my right foot. I felt that my movements or walking was more flexible. I joined the track team so I can learn to be accustomed to not just walking but running as well. I may not be the fastest runner or always last to the finish line, but I improved my time quite well. I even got the most improved runner award!

 It was not easy growing up with cerebral palsy. When starting kindergarten, I knew I was different, but thought it did not matter because I was me. Then I was starting to notice that people and children treated me differently. It was like that over the years. I was bullied and teased for walking weirdly. I did not always participate in activities that I wanted to participate in because people did not think under my condition that I could. They were scared, believed that I was fragile or could break. I remember in fourth grade; I broke my pinky finger on my left hand after playing dodgeball. It took several weeks before it healed. Then when I got the doctor’s orders to play recess again, my peers, even my friends, did not want to play with me or wanted me to involve in physical activities because they thought I would have another broken bone.

I did not let that stop me from trying. Every time there was an activity that people thought was too difficult for me or that they were afraid something would go wrong, they would say things like “Justin, you should not do this because of your leg”, “Justin, you would get hurt if you do this”, and “Justin, I am sorry but you are not going to join people in this activity”. Hearing those comments from them made me feel angry. I was angry at my body for making me this way, but I was angrier in the unfairness that my peers could do those activities and they wanted to rob me of those experiences. So, I decided at a young age that I wouldn’t care what they say. I was adamant, stubborn.

When they said I couldn’t do a steep hill when going on a hike, I accommodated by crawling and climbing up the hill. When in fourth grade when joining my peers in cars to go on field trips, there was a particular jeep that was too high for me to get in and my teacher and aides did not think it was safe for me to get in. I was sneaky and got in the jeep by myself without their help and smiled when they gave up getting me out of the car and took me on the field trips in that car. In fifth grade, I wanted to join some boys playing football, and when they said no, I still try to participate next to them on one team to show them what I can do. They never pass me the ball or let me participate, but I still do it every day. Even after I graduated, I did cliff diving in Hawaii and my birth mother was concerned that it was not safe for me, but I convinced her by showing that I could when I watched how a person did it and followed exactly how they did it. Whenever someone told me there was something I cannot do, I tried my hardest to prove them wrong. That I am capable, and I was not going to let my disability prevent me from doing things that I wanted to do.

Every time I prove them wrong, it feels like I accomplished something. I know I am not the first and that there are other people with cerebral palsy that showed that they can do things that other people could not do before me. However, there was nothing more satisfying than looking at the person when finishing a particular activity and seeing their shocked expressions. I knew I did not just accomplish doing that activity, but I also accomplish changing their mindset, changing the stereotype of how they looked at people with disabilities. I also felt free every time I do this. Because when people think there is something I could not do, it felt like a barrier or that I was in chains bonded to their perspective. Proving them wrong broke those chains and took down the barriers. Not only I did do it for myself, but I hope that it would also change their mind about other people with disabilities.

I admit that I did not accept my cerebral palsy as part of who I am growing up. I also think subconsciously that I wanted to prove people wrong because deep down, I wanted to be normal. It was not until later that my view changed when I joined this program called Youth Leadership Forum with Disabilities in Sacramento when I attended in my senior year. It was a program of high school students, college students, and adult mentors all over California, all with disabilities. I met all kinds of people with different disabilities, and it made me realize they have similar stories to mine. They were teased, bullied, and told what they can or cannot do based on their disabilities. After that wonderful week, I realized two things. One was that we all have our disabilities or limits. There are some skills or abilities that some people cannot do, but that does not mean our limits should define who we are. Our limits strengthen us to do the things that we can do and can even help us do it better than other people who did not have that limit. The second thing that I realized was that I wasn’t trying to be normal; I was trying to convince people to see past the disabilities and see me as normal. And because of my accomplishments with my disabilities, it made me realize that my cerebral palsy isn’t a handicap, it is strength.

After that week, my perspective was changed on people who I have grown up with that have disabilities, some of them were in a group home of my adopted mother’s side business. I made lifelong friends with people of different types of cerebral palsy and additional disabilities. My new perspective broadens as a teacher for the deaf and working with deaf and hard-of-hearing students with additional disabilities. I remember when I was subbing for a high school special education class or working as an aide at Beverly School for the Deaf, I was in awe of the students there. This perspective helped me to push those amazing students to see that there are things that they can do if you believe in them. So that they also believe in themselves.

I hope that you not only acknowledge people with cerebral palsy and people with disabilities but also see them as a person that they are. Help them toward what they want to accomplish in their life. I encourage you not to tell them what they cannot do, but to help them find strategies, accommodations, or at least give them a chance to try to do the things that you feel would challenge them. Say things like “I see you would want to try this activity, but there is a problem here. How would you like to do this?”, “Why do not we give this a try?” and so on. Involve them to help solve those obstacles that they may face. I also encourage you to believe in them to try things they never tried before. Because they may never know what they can or cannot do if they do not try and it would feel so good to see the smile on their face when they see themselves on what they accomplish. If there was something that they couldn’t achieve at that moment, reward them for trying. Because if it was not for my adopted mom who always believed me the moment she saw me, I probably would not be here pushing past those barriers and obstacles along the way. So, believe, trust, and love them for who they are as a person.