REGIE'S BLOG
In The Company Of Angels ...
Posted: 5/18/2010 8:50:23 AM
This past weekend was the Angelman Syndrome walk-a-thon. Angelman Syndrome is the disorder my precious Isabella has. She is missing a small piece of her 15th maternal chromosome. The symptoms of Angelman Syndrome range from lack of speech and gross motor skill delays to seizures and acute insomnia. Kids with this disorder are called "Angels" and it's such a perfectly appropriate moniker. The delays and disabilities brought on by this disorder are balanced by angelic dispositions and unconditional affection for everyone. My Bella is living, breathing love. In a few weeks I'll be releasing a book called "Angels and Idols." It talks about our struggles with Angelman Syndrome, its effect on the lives of those surrounding it and the questions all parents with special needs children ask in their darkest hours. It was painful to write but my prayer is that it will help other families wrestling with raising a child considered by the world to be "special", and bring a ray of hope and possibly even a fresh perspective to them.
In our current culture, we've substituted nice words for the old words. We use "special needs" instead of "retarded. We say "challenged" instead of "handicapped. I think those are sensitive distinctions and I'm thankful for them. On the other hand, the word "retarded", from a purely linguistic standpoint, is correct and should have no negative connotation whatsoever. The reason it does is because it has become such a slang pejorative. The word and concept "retarded" is such a punch line no one seems to think twice about it. Our own president made an off-the-cuff joke about being able to bowl only at the Special Olympics on the Jay Leno show, and the audience laughed heartily. I winced and furrowed my brows. Even so, I myself have made insensitive comments in the past, using words like "idiot", not thinking about my own daughter's condition and the implications of my speech. It's easy to do because the people at the heart of the joke are defenseless.
We feel a certain license to use the "special" people of the world as punch lines because deep down in a secret place we don't talk about at nice cocktail parties, we all know there's something mysterious and unsettling about them. They don't feel natural to be around. They are not a part of the "normal" human flow and no matter how much we try to act like they are "just like us - just a little challenged in some areas," we have to train ourselves to think that way. Our natural first reaction to someone 25-years-old, drooling or talking to the air, or laughing too loud in a public place is not total inclusion and acceptance. Our first response is probably something like, "what's wrong with them? I don't want that to touch me." As my daughter ages, I see the turned up noses and confused stares when she's in public with us. Everyone with a special needs child knows exactly what I'm talking about. As parents, our first reaction is obviously to protect our child and lash out at the person who lacks the understanding. But deep down, we know why they have those disapproving looks on their faces and why they turn the other way instead of engaging our children.
I've been sidelined with some foot problems lately. The doctor's orders to stay off my feet have planted me in front of the History and Discovery channels more than I care to admit. I am a songwriter by trade and part of being good at that trade requires me to study the human condition from all angles. I am constantly intrigued by what people do and why they do it, so the brain candy offered on networks like these is hard for a guy like me to pass up. Eventually, at the heart of every program designed to unravel certain mysteries or examine this or that about human behavior or study the reasons behind this or that revolution or migration or coup, are the implied questions we all ask ..."why are we here? What is the meaning of life? What are we racing toward?" Seeking the answers to those questions takes humans in a million different directions.
According to the prevailing, current science, evolution and nature selected us all to be the best and brightest and strongest and smartest and it discarded everything else. Let me first say I'm an open minded Christian regarding these matters and continually hold to what the Apostle Paul said, "now we see through the glass darkly." To me that has always meant we don't know the whole story and are learning as we go. I also believe God is big enough to be questioned over and over and over again and I do not have a quarrel with those who do the questioning. I don't freak out about words like "evolution" or "natural selection. The last part of Paul's quote is ..."but then face to face." In other words, one day we'll see everything as it actually is. I believe that firmly, so I enjoy the ride of knowledge and it never shakes my faith. But when science asserts that evolution and natural selection are weeding out the slow, weak and unprepared, I get a little nervous. What does this say about my daughter and her condition? How many steps is it from "she's an evolutionary mistake" to "it would probably be best if we dispose of her for the good of society"? I know that sounds overreaching and paranoid but it has happened before and not all that long ago.
Hitler's final solution started with executing the mentally ill. If reaching the pentacle of human endeavor is your goal and weeding out "evolutionary mistakes" becomes part of that goal, all you really have to do is remove the sacred, the spiritual and the moral from your society and it's not a far leap to doing away with those who can't contribute or move us further down the evolutionary highway. Hitler was a monster to be sure, but his ideas on these things originated in the United States as something called Eugenics. Smart people can (and do) debate Eugenics until the air is out of the room, but the gist of it was ...we can solve everything on the planet by ridding ourselves of those with "defective" genes. It started with sterilizing the "mentally retarded" so they couldn't reproduce, but it evolved fairly quickly from there (just as the Jews). Though Hitler bares the brunt of the world's indignation, there were plenty of famous and very accepted thinkers that weren't that far removed from supporting at least the theory of his ghastly actions. George Bernard Shaw and Charles Darwin both have some pretty frightening quotes on the subject of how to deal with the mentally challenged. They obviously didn't kill anyone and Hitler did, still, the very entertaining of those thoughts makes my skin crawl and causes me to hold Isabella a little more tightly at night.
I've often said that I'm interested in science but I'm ultimately a man of art. To me, if you only see the world in scientific terms and never see it as an art piece, you can easily find yourself in dangerous and disturbing waters. Science is supposed to ask "why" but occasionally veers into words like "mistake" or "anomaly. As benign as those words are, they are essentially words of judgment on someone or something, and can send us careening into moral ambiguity. Ironically, some Christians find themselves on similar paths. I've head believers say that all of these problems wouldn't have occurred were it not for all the sin in the world and that, essentially, people like my daughter are a result of someone else's moral corruption. Once again, I go back to the words of Jesus when he was asked why a certain man had been born blind. Who had sinned? The man's mother or father? Jesus' response? Neither one. Jesus said the man was as he was so the glory of God could be revealed. To my mind that means, "so a little more of this beautiful art piece can be shown."
I don't know why my daughter is the way she is. I don't know if she's an evolutionary mistake or if she lives in her prison because of some past, horrible sin committed by someone I never met. What I do know is that she is a beautiful instrument of love and joy that continues to change and shape my life and the lives of all those around her. I know she's made me a better man and has opened my eyes to worlds I would've never known about before. I know that she has caused me to meet people I would've never met and write songs I would've never written. If she is a scientific mistake, then she's more than an artistic necessity. The beauty she brings into the world is impossible to define or quantify.
The "special people" of the world are more meaningful than we know. Their innocence and acceptance of our pettiness and pride is remarkable. The way they forgive us of our shortcomings is hard to fathom. Their unconditional love, even when we don't deserve it, is nothing short of a miracle. Some may think my daughter is a mistake but in many ways I would rather be more like her than have her be more like me. So, the next time you're face to face with someone whose mental or physical condition makes you uncomfortable, the discomfort you feel may not be because they're not enough like you. It may be because you're not enough like them. Such is often the case when mortals are in the company of angels.
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