The entities that teach me the most on this adventure, are my beautiful, forgiving and courageous gurus, Bri and Jus. Recently Bri studied a passage written by a woman about how it felt to be her (How it feels to be colored me, by Zora Neale Hurston - also author of 'Their Eyes Were Watching God') Her essay inspired this essay by my daughter, How It Feels to be Disabled Me, which brought me to tears.
Read both in honor of change-makers, compassion and social justice. It is no longer a fight for mere equality, but for inclusion, acceptance and love. My own journey is far from over and I hope I don't have to die in order to be heard. Thanks to Dr. King and all who he represented throughout history. Thanks to all who are courageous enough to speak up for those who are not heard. Thanks to all who listen and change. And to those consciously pursuing lesser endeavors...may you be exposed, enlightened and loved. peace and love, zen jen
and...thank you to Mr. Herland for bringing this very important subject to my daughter's attention and empowering her to share her powerful story in a safe and loving environment. bravo.link to original essay: http://grammar.about.com/od/60essays/a/theireyesessay.htm
Bri's essay: How it feels to be disabled me
I am a disabled person diagnosed with autism spectrum disorder, but my diagnosis isn’t similar to most of the other kids, especially my brother, also diagnosed with autism.
When I was a toddler, I had no language. I made only animal sounds, which my family thought was cute. Later I learned sign language from my mom and in preschool. For over a year, signing was my only form of communication and I was good at it. In the spring of 1999, I started speaking and by the following fall I was speaking in complete sentences. Upon returning to preschool that year, I surprised all of my friends and teachers with how diverse my vocabulary had grown over the summer.
As I grew older, I learned from my mom that both my brother and I were diagnosed with autism. The big difference with our diagnoses is that I have high-anxiety and the ability to communicate verbally, while my younger brother, Justin, is nonverbal. Sometimes I have a bit of a hard time understanding him. Instead of telling my mom what he is doing, I panic and tell Justin to stop what he is doing. Usually when I do, Justin becomes as nervous as I am and doesn’t stop his activity. The panic in my regulating voice often leads to intense conservations with my mom about who is supposed to be in charge. Whenever she tells me not to regulate my brother, I say that I won’t, but no matter how hard I try not to, I still regulate Justin.
Once, when my brother was in a bad mood on our car trip from Amherst, MA back to Olympia, WA, he started to do lots of mischievous things in his anger. One such behavior he did was dumping a whole gallon of grapefruit juice onto my seat while I was out of the car at a rest stop. YUUCCKKK!! Mom was already as mad as I was with Justin and we both yelled at him as we cleaned up the mess.
After getting back on the freeway to continue our journey, I was still annoyed with Justin and worried about him causing more mischief. However, almost every time I turned around to look at Justin and tell him, “Relax, Justin,” my mom would say, “Don’t regulate your brother.” Although I tried to take the warnings seriously, my attempts to resist regulating were fruitless. My lack of control over regulating my brother is difficult and sometimes I feel bad and annoyed that I am having the same disagreements and regulations occurring every day.
Due to high-anxiety, I am nervous and worried almost all the time about everything around me. I constantly think about the actions of myself and others and their worst-case scenarios. My mom and our helpers encourage me to forget bad thoughts and think about good things. Although they usually perk up my courage, I continue to resist at times when I feel panicked. Sometimes my anxiety is difficult to control and the more people, like my teachers, try to step in to help, the more freaked out I become. Often they think they are comforting me, but when I am overwhelmed the best thing to do is let me self-regulate and then address whatever was upsetting me at a later, less chaotic moment. Throughout my education, my mom has worked to make agreements with my teachers that allow me exit the room if I am getting overwhelmed. Sometimes it works and sometimes I freeze.
Once in second grade, I was being continually asked to exit by my teacher. The more she asked me, the more I panicked. She persisted and I had a meltdown. I was saying in a voice of panic, over and over again, “Noooo. I can’t." Eventually she grabbed the back of my desk chair and began to drag it to the back of the room with me in it. Apparently, this made me scream and panic more so she stopped and called for help. The special education teacher called my mom who showed up to see my desk spun around with me facing the class and me frozen in my desk with my head down. She said she was horrified by this and ran up to me. She finally convinced me to move by suggesting we ‘get out of here and go get some ice cream.’ She also said that the shocked and horrified looks on my classmates’ faces let her know that they were panicked as well. She later told the school that she felt the teacher was bullying. Kids did this a lot at my school and she felt that the teachers’ behavior didn’t help.
I have huge challenges with control of my resistance and anxiety in school, but I am an excellent student. I am taking honors science and math courses because I plan on being an animal biologist. I hope to study in South Africa. How autism affects my education, is how I understand certain topics that are abstract. Creative thinking is difficult and word problems in math are so confusing. I have a photographic memory though, so this really helps me to memorize information that I read. When I was ten, I memorized a six-hundred-page animal encyclopedia. I was a lot of fun at parties. My participation with groups of other kids is tough in the classroom. I get distracted by a lot of discussion and background noise. As for socializing, I view my peers or other kids as not accepting me, so it’s difficult for me to have the confidence to reach out to them and initiate conversations. Plus I get stuck and am not sure what to talk about and end up talking a lot about whatever is in my head because I am nervous. While the isolation of not hanging out with other kids feels comfortable for me outside school, I can sometimes get a little lonely.
I feel like a bag of miscellaneous objects among bags of other types. If the contents inside the bag are dumped on the floor, there is a jumble of small priceless things discovered. A phone constantly ringing and shaking violently, a traveling computer that processes all the information throughout the day and stores it forever, a heart locket from someone special to keep all of life’s pictures precious, a white dove holding a branch of a tree, a rusty wrench slightly bent due to heavy wear and tear, one magnet stuck to the rusty wrench, the other stuck to the opposite end of the pile, a golden badge with a tall lion, a heavily-dented shield, sunglasses, and a coat with a missing pocket. Even though my diagnosis still causes social isolation for me, I am still beloved by my friends and family because of my kindness and determination. I am also very knowledgeable about the environment and threats facing it today. I am committed to making myself and the world better. Who knows how my diagnosis will affect my career in the future and my study of animals and environmental issues? However things turn out, I will always be the best that I can be. My mom and dad tell me that I am all I can do, my best. And I do it, every day.