"I Don't Feel Defeated"
by Daniel Treacy, a young man with autism who cares about the little ones leading frenzied lives with no hope that their intelligence will be discovered
By a quirk of nature I was born with a cruel disability called autism. Have a kid with autism and you will discover things about the human brain that defy logic and disprove old ideas. Now the sunlight of new information will change many lives for the better. Not that autism will be erased but the ignorance about it will be removed.
I have seen people having seizures. I realize that their neurological systems are temporarily on the fritz and that those seizures are going to recur because of damage in their brains. How medications help them I don't understand yet but I plan to learn about that later because medicine is so helpful to me. Autism seems to me like seizure activity that is continually disrupting my movements without causing a standard type of seizure. The tics, posturing and stupid compulsions are all part of it. Someday someone will free me because briefly stated, autism stinks.
My life is very unfulfilling. I am quite intelligent I think but I can't do the slightest, simplest thing to take care of my own body. My life is constantly controlled by those who care for me. When they can understand my needs or my wishes, I am OK. When they miss my cues or don't FC with me, I am sunk in frustration. No one but a person with quadriplegia could relate to this description.
However, most quads can speak and that gives them a way to be included. Autism usually doesn't permit a chance to speak out loud. Fortunately, there is FC to help me. But, boy, is it slow. The house could burn down before I got the message typed.
Most people look at me with pity or revulsion. They see bizarre movements, clothes usually askew. Sometimes I make humming or moaning sounds. But that is the best I can do to indicate a need or a discomfort. However, what humming usually does is to cause stares and provide proof of my retardation. But I'm alive and well inside this drooling, uncoordinated body. I'm just having a tough time proving it.
Time I think will be on my side. New medicines are being developed, and fancier computers will help us break through the ignorance and fear.
I understand all spoken words. I can read facial expressions and body language. I can feel pain in my body and in my heart. I have never had one moment of education but I can read on a very high level. I can spell, add, subtract, multiply and divide. I enjoy listening to my beloved Mozart tapes, but my greatest pleasure comes from poetry. The best of them is Invictus. It helps me to have courage when I feel so alone. I also enjoy narrative poems like The Ancient Mariner and The Highwayman.
The neurological aspects of this rotten disability prevent me from holding a book or turning pages. The professionals just thought I was too retarded to be interested in books or poems. With FC I'm now able to display my preferences. I like to read Dickens' books, and other authors. Especially Grisham's The Client and The Firm. But lots of lighter stuff too. I did read Victor Hugo's book Les Miserables. What a wonderful character was Jean Valjean. He remembered the bishop's kindness until the end of his life. I'm so grateful that our friend and local librarian told my Mom about the books on tape for blind and other handicapped people like myself, My Mom reads to me sometimes but she always falls asleep on me.
I enjoy good TV shows, but not the disgusting talk shows. I've been learning about the American justice system by watching the O. J. Simpson trial.
My favorite shows on TV are mysteries, especially Sherlock Holmes and Inspector Morse. I like Regis and Kathy Lee because they lift my spirits in the morning when I sometimes feel depressed about my limitations. Jeopardy is my all time favorite. The very best of the Nova series make me dream about what I might have been able to do.
I don't feel defeated though. I have lots of guys trying to help me get a break. My doc is the best and if it's safe he will use it to get me out of this trap. My family is pretty patient considering all the messes and disruptions my condition inflicted on them when they were growing up. They loved me anyway. I merely want you to know that they're OK. Now my parents are a different story. Better than any I would say. They put themselves on the line for me every day. I am a very lucky guy. How many people like me reside in isolation or in back wards I can't even guess. Thanks be to God that people are learning more humane ways to care for disabled people like me.
The need is there for appropriately trained assistants like Annie Sullivan to interpret for us and deliver personal care as individually required. We have the God-given right to live our lives in as much freedom as we individually can manage. Include us. Give us the right to communicate no matter how halting our speech. Find ways to pay for the technology we need. You shouldn't do less. Get going there's lots to be done.