Back in February, I had an eye’s accident incident. I am okay and there was no pain, but I got embarrassed and I knew some of my friends would laugh it off. A little trip there and there does not bother me, but last week bothered me a lot and I did not know why until now.
I did mention that my friends would say, “Oh, that would be typical Justis”’ because I would trip so often in elementary and middle school that they stopped asking if I was okay and just shrug it off as if it was something funny, something that was part of me. Here is a full story about that. When growing up with cerebral palsy, I had physical therapy for as long as I remember, right when I was adopted. I was not flexible moving as an infant, but my adopted mother Elaine and I worked together exercising my body to make me move more flexible, more independent without any accommodations. When around two or three years old, when starting to walk, I would have to rely on a walker to go around places in preschool, around the house, etc. I was stubborn and wanted to try without my walker. Even after physical therapy sessions were finished, I continued pushing myself at home trying to walk without it so much that when I get exhausted, Elaine would tell me “Slow down, take a break. Do not push yourself too hard”. Despite her mother worrying about straining myself too much, I still continued to do the exercises from the therapy or to try to walk more “normal”. I would try to walk without a walker for several steps and balance myself. When I felt like I failed, I would keep trying over and over until I would walk those specific numbers steps that I would tell myself to achieve for that day and try to push myself to walk more than the specific number the previous day. I never get myself breaks to enjoy the success.
By the time, I believe, I was four years old that I was able to walk just fine. However, I would need to walk with braces. My right foot was shorter than my left foot and that my left leg and foot looked like I was walking on one heel all the time so the braces were there to try to keep my leg and feet straight enough. Physical therapy would happen three times a week after school. Sometimes more. It would continue until by the time I was in fourth or fifth grade. There was surgery at that time that would have helped me walk more normally at that young age. Elaine wanted me to take it. First she did research and she learned about the long term effects on those patients who had the surgery at a young age and finding out as the child grows older to their teenage years, she learned for those patients that their bones grew or expand and the bones was not compatible with their results of the surgery, thus making those patients never having to walk again or were in worse conditions when trying to walk. After finding this out, she declined the doctor’s recommendation at that time for me to have the surgery. They were angry and felt that she would be making a mistake. She doubted herself a bit, but she searched and found the Shriners hospital and a team of doctors that were compassionate to her fears and reassured her to try an alternative plan and that I would take that surgery once I am fully grown by the time I would be a teenager.
I remember when I was in Kindergarten, every monday, I would go to Sacramento for the Shriners hospital to put on the cast on my right leg. The cast would be changed every other week or month and when it was off, I would be stuck wearing braces daily all day and would have to sleep with it at night. I hated it. Every time I need to take a bath with my cast, my mom would wrap so many plastic bags around my leg with duct tape and tell me to put my feet outside of the tub so the cast does not get wet and the plastic bag would protect any trips from the tub. I would have to take a quick bath. When going to school during recess, I can play because my leg does not have a broken bone, but the children around me were very scared to play in case that I would get hurt because I did not know how to express what was going on and they would assume that it was broken based on how I walked.
By third grade, I would wear the cast less as it would probably be periodically every three months for one month where I would wear the cast and then go back to wearing a brace afterward. Sometimes I do not have to bring brace to school because the doctor would change strategy for me to wear it at night. Sometimes I forgot to put on braces before bed and sometimes I did not want to. I was tired of the constant doctor appointments to Shriners. I was tired of having to do extra time and effort to put on my brace, to wrap my leg around in plastic bags before taking baths. And most of all, I was tired of many of my peers in my class reluctant to play with me because of my cerebral palsy and the staring looks on my braces and cast. Children at school and people outside my adopted family around me viewed me as fragile, as if I would break at any moment. Even there were moments when I visited my birth family that when they saw things that seemed challenging for me at the moment, they felt I could not do those things.
When people tell me things that I could not do, I get angry. I would be stubborn and would go and do it despite that I did not ask or warrant their permission. I wouldn’t care if I would get hurt in the process or how embarrassing I would look to do it. One example was I remember in fourth grade where I have to take trips daily half days from my primary school to a special school, there was a jeep that was a little high to climb and the inside of it, my deaf and hard of hearing peers were so in awe that the old jeep car has two back seats that were facing each other on the side of the car instead of the front of the car that we all fought for it. We were assigned to different cars daily. On my first time being assigned to join in the jeep and the assigned seat in the back, I got hurt when trying to get in the back seat the first couple of times. Afterward, they said that it was dangerous that I was forbidden to get in the back seat of the car or in the jeep again. I felt the injustice of that decision and being angry. I remember making an insidious plan one day where I would casually walk to my assigned car and suddenly ran to the jeep when it was open and forced myself to try to get in. It was successful after a few minutes and power play from the teacher’s aides. Once I got into one of those particular seats, they were so angry that they told me to get out of the car. It didn’t matter. I was smiling and told them that I did it so that they knew they were wrong and got out of the car easily. It happened a few more times and there were reprimanded consequences from them. Yet, I continued my action so often that they eventually gave up at one point and went back to the original plan. The next time I was assigned, I think I grew a little because I got in with some struggles and did not get hurt. I smiled all the way to the special school. I felt that something like that was so trivial to other people was one of my greatest accomplishments of my childhood.
I have several stories like that. I wanted to fit in, not let my cerebral palsy define what people can tell me what I can or cannot do. People think that I do not know my limits and there were times where I was stubborn to see my limits from my disability and my other abilities, but at those times I tell myself, “How do I know what my limits are if I do not try?”. So that was why I keep trying to do things that others were afraid I would get hurt and when I do recognize my limits, I would try to do some things such as if the hills were too steep for me to walk and balance, I would crawl. If there were sports or activities that I feel that my cerebral palsy would be affected (such as running slow, or how I would throw the ball, etc.), I would try those positions first to see my limit and if there are some skills I need to work on. If that does not work, I would find other positions in the activities or games that may be better for me so I would feel more comfortable and included.
When I got to middle school, I did not need to wear my cast periodically anymore. I would only wear my brace at night. I was more relieved about the less doctor visits and being burden-free from the necessary consistency of wearing a cast. However, it did not stop from my class peers whispering about my condition, ridiculing me behind my back. I was aware of the ridiculing in my elementary school years, and I thought children were just immature. It turned out it hurt more when my deaf peers found what they were saying behind my back and told me. It does not even help when my own deaf peers laughed at me when I tripped. In elementary school, they were afraid when I got hurt and advised me not to do those activities again. It just motivates me more. Now when they laughed at me when I tripped, it put me more distance with my deaf peers. Eventually, it became a norm as I was the “random, trippy guy” and that I was their “entertainment” of the group unintentionally when things became dull. I accepted my role to it by the time I was in high school and even laughed along with them when I tripped. I even enjoyed my role in it. When I was a freshman in high school, I finally was qualified to have that surgery because I was fully grown. I got the surgery and ended up staying in Shriner hospital for three weeks for physical therapy. At first, it was like having to retrain my body to walk all over again. I started doing some steps a couple of days after the surgery. It was challenging and after step by step, I was physically exhausted and went back to bed. There were those times where I did not want to do that again, but thanks to my mom Elaine, she pushed me to keep trying. She said that I wouldn’t go this far with all my hard work for nothing. She was right. I keep going to do the required therapy daily and when I was done, I would do the independent study work for school. By the time three weeks passed, I was on a sort of brace/cast where I would put it on and wear it to school to make sure it was straight for three more months and could take it off when it was time to go to bed. I loved that kind of brace or cast because I didn’t have to go to the hospital to change. By the time it was off, I was able to walk better. I was still able to trip from time to time, but not too terribly and I was training myself to try to balance back after a trip instead of the usual trip/fall routine. Sometimes I would make jokes about it. One time, I tripped and balanced myself back so casually that one of my high school peers asked if I was okay. I smiled and said, “What do you mean? Nothing happened. I tripped? Pfft. That was nothing!” and laughed it off. They laughed too. The norm was sinking in.
It continued through college and there were mixed reactions when I tripped. I tripped less and less in college. When I go hiking and sometimes see hills that would be steep uphill or easily fall downhill, there were one or two college friends that stayed behind in case something happened. They were worried when I sometimes would have to use my hand to “climb” uphill or when it became slippery downhill that I took my time. They never asked if I needed help and only asked if I was okay. That was something I was not used to people doing around me. They see from my reaction to see if I can do that or not and never suggested that it was unsafe nor that I should stay behind. They just watched me.
Last week’s incident made me look back and compare what people’s reactions around me growing up and what people’s reactions now. I realized I prefer how my college friends treat me than how my childhood friends or people around me treated me. I understand that they are all concerned differently in their own way. Just it made me more insecure growing up about my disability that I had to try to push through their boundaries to prove them wrong. It also made me realize I am grateful for my disability that leads me this far. What people took for granted about their normal functions, physical activities would be hard for certain people, especially with people with disabilities, made me feel more appreciative for what I went through. I can walk, I can run, I can be active in physical activities and sports. I can exercise. I can climb up and down on hills. I do notice that my right side of the body is weaker than my left, but my left took more strength and ability to help me function throughout my life normally. I love who I am today and my body. I just do not like the stigma on people with disabilities, especially those who people looked at and judged them based on what they see, and not on what they do.
Thinking about the eye incident and your reactions, I have to be honest. I am not really used to that. I was expecting some laughter, I was expecting stories about the times where I made my friends then. I was not really used to people saying that they are glad I am okay. I felt like I was showing my weekanes for my disability and that people would silently judge me for not taking good care of myself. However, I switched my thoughts around. I know you all care about my well-being and that you all are glad that it did not become worse. I am really glad it did not become worse. I also had a perspective that the whole entire time, I was so busy trying to thrive on my physical mobility and breaking barriers that I spent a lot of time trying to make people comfortable around me. Whether that I am Deaf and in need of accommodations, I would sometimes use my voice for them. Whether that through job interviews that they look at my physical disability that I had to drop the accommodations down to one (not lifting more than 50 lbs) or none at all, just so that they can hire me . It made me realize it is really time for companies and people to try to accommodate us, not us accommodating them. And we have to show it and make them uncomfortable with their own bias so that they can grow, understand, and help us thrive and see past our disabilities.
Just like Serrina, my sister, who may not be verbally expressive and have a lot of limits on her physical mobility, were able to prove she was able to go to the store, buy a specific item, hand it out to the cashier, and go back to her drivers just to prove to the doctors that she need an electric wheelchair and that it would benefit her. Just like several students who are deaf/hard of hearing (some with additional disabilities) I had where I tried to push them to do things where I know they can succeed, whether they do not like it or scared to do so. Just like I still get judged by strangers or people around me who do not know me well and think that because of my deafness and disability, I could not take care of some things myself. I want to show people that there are more to seeing their mental and physical disabilities because they are no different than anyone who can succeed on many things on their own and also have many things that they are not able or haven’t tried to learn to do. We all have our own limits, our own “disabilities”. What matters is how we use that to overcome the barriers
Justis' MultiStories 