World Autism Day: Portraits of Autism
I have made a few posts in the last few years about my brother who has Autism. Today is World Autism day. April is Autism Awareness Month. Today I was visiting him like I do a few times a week. I wanted to make some portraits of him that show a bit more of who he is as a little person.
"My name is Johnny. I can not tell you that I have autism, as I can not define what autism is. I was born on December 1, 2000. I was premature, underweight, and almost died due to being so underweight. I was airlifted to Boston after being delivered via emergency c-section. After 47 days in the hospital I was allowed to go home. The first year of my life I developed fine. I was like any average child. Close to being a year old I started to have seizures and mild strokes. During those moments my family was unaware that I was changing. My brain had sustained damage during the first few months of life in side my mother. It was later discovered that I may have had a massive stroke while developing in my mothers womb. The next few years of my life were filled with tremendous set backs. I have been developmentally delayed. My family argued constantly about what to do, what we should do, what we shouldnt do, or how we should and do things. I have an amazing older brother whom I look up to. I have nick-named him Yellow Bee. He gives me high fives and that makes me happy. When I was younger, about 4-5 years old he stood me up and gave me a light push on my back. Those were my first independent steps. He encouraged me and believe in me that I could walk, when others did not. He saw in me a strength and wanted me to work for it. My mother has always been reluctant to let me take those steps. She is scared. Scared that I may fall and get hurt. Which came true two years ago while at school. I was left to walk in front of the class, by myself in a walker for those who can not hold their balance so well. The teacher was supposed to be next to me the entire time. She was behind the class. The wheel got stuck and I fell of the curb. I broke my wrist, as it was strapped into the device. My face hit the ground and I broke my nose. My family, my brother especially was so upset, mad, and very scared for me. He is always worrying about me. You can see that my nose has been broken due to how I hit the ground. It makes me sad. I like school, basketball, going for a ride in my brothers truck. I have a hard time eating food. I hear everything that is said to me. I try talking to people, but sometimes that just dont seem to understand what I am saying. I have a hard time getting words to form the way they do, the way they talk to me."
Taking care of someone with autism has challenges but it comes with an advantage. It give me a different perspective on the world. I constantly try to imagine the world through his eyes. My brother and I have an unspoke language. When we make eye contact at times, we understand each other. It is like a visual telepathic conversation that we engage in. When we make eye contact, it is like we are speaking, saying things to each other. It is hard to explain, but never-the-less, it is one way that we talk to each other. As a photographer, I am by nature an observer. I watch. I understand through watching. I understand by observing. I have been observing him for years, trying to discern what he is doing, why he is doing, what is life for him. The conclusion, due to the language barrier, the speech impairment, I may never know. The idea of not knowing is quite painful, as I want to ask him questions, such as, what are you thinking? why are you doing that? and receive an answer. Some questions can be answered by spending time with him, but honestly, it is hard. Understanding his words has taken years of development on both our parts. My mother can understand him much better than I can because she has such a fearless presence with raising him. My mother has devoted her life to raising him without conviction, doing her best to give him life, a place to live, and making sure he has what he needs and wants. Autism by some peoples standards might be a bullshit disorder, disease, label, but the truth is, autism is another characteristic that make my brother as different as the next person. Autism is, who my brother is and what he lives his life with. I am proud of my brother for being as much of a influence to me as I am to him. If you have someone in your life or know someone with autism, try and envision the world through their lives, you might be surprised what you learn.