May He Rest In Peace
Filed Under (Autism and The Media) by Estee on 03-01-2009
In the dark of the night, as Adam sleeps beside me in our hotel room, I put on CNN ever so softly to catch up on what is happening in our world. Too many pina coladas and sun can make one a little soft and mushy.
He looks so peaceful, my Adam, spending sunny days on the beach here in Mexico and I know that every day we have is precious. He looks content and exhausted. As I turn my head back towards the television, the room completely black save for the glow of the screen, I read the by-lines that Jett Travolta — John Travolta’s son dies at sixteen of Kawasakis disease. So why don´t we let them mourn and let Jett rest? Instead, I am reading on many of the autism blogs about it. “Jett was autistic…they should have treated him. “ All the speculation….Of course I do hope the parent´s were not negligent in any way, but none of us have all the information. So I’m putting in my two-cents.
It’s the “autism community,” whether it’s Scientology belief that if you have something you can cure yourself (I am not educated in Scientology and do not know if this is accurate but it is what I have read on your blogs), we have become a community of pit-bulls (I wasn´t also not fond of Sarah Palin´s hockey-mom analogy). I’m not saying I endorse that philosophy that people should cure themselves. “Treatment” often leads to very dangerous therapies and reprecussions for autistic people. When parents cannot accept their children, they often try unfounded, unproven and very desperate things.
Yet, either for the sake of “neurodiversity-awareness” or those who want to claim that autism should be annhiliated, we are all out there identifying autistics. In that very act, we are engaging in something dangerous to humanity. Usually it’s not in good ways that we identify autistic people, but rather to point out all of their ”deficiencies.” We who recognize the positive contributions autistic people make in our society identify too, but it’s at least better than suggesting that all autistic people are not good enough as they are, or recognizing their unique abilities and offerings to our world. The point is, once we don´t see difference, we’ve won. Or we can see it and just like a tree, a rock, or a river, accept that it’s just a normal part of our surroundings.
We must think then, for better or for worse, what kind of spectacle is this? Does it matter? Once you are tuned in to disability and autism, you can see autism all over the place. You can see flapping and flailing even among the non-autistic. And what´s wrong with that? If we really believe that we all belong to the human community, then we accept autistic and all kinds of people. Jett is gone. May he rest and let the family live in peace.
I go back to Adam now to swim in the caves in Mexico. I treasure every day and thank God I have him and this moment – my wonderful, beautiful, autistic son. We don’t treat him as anything but the gracious and loving person he is. I think the world is lucky to have him.
ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer.Curator of Art. Founder of The Autism Acceptance Project. Mother of Adam. I like to write about our journey, musings, attitudes towards autism.
Beautiful post, thank you.
In reading this post, I am truly enlightened by the ideas that you provoke in your readers. Like you, I agree that it is “dangerous to humanity” the way in which people identify autistics—normally to batter and criticize, and rarely to ruminate the endearing and astounding qualities they bring to humanity. It is human nature to conform to what is considered “normal” and yet the term normal is in itself obscure. Who has the right to decide what is normal? We once punished and humiliated those who wrote with their left hand, deeming it a sure sign of the devil. However, in contemporary times, whether you’re a “lefty” or a “righty” does not matter. It is unsettling to think that society could be so ignorant, but in many ways, we still are. We create our own perceptions of what is normal or “right”. I agree that there is nothing wrong with the flapping and flailing behavior commonly associated with autism. The fact that humans can flap and flail should mean that it should not be looked upon as weird or unusual. I also believe that as humans we have to learn to accept and we must criticize less. I applaud your focus on eliminating stigmatic labels.
I do wonder though, whether you truly consider autism activists in the wrong for questioning the nature of Jett Travolta’s untimely death. While I concur that doctors and psychiatrists are quick to diagnose and medicate children, this doesn’t necessarily mean that all treatments or medications are harmful. Says the New York Post: “According to the Church of Scientology, people with disabilities like autism are classified as “degraded” and capable of curing themselves by working harder on the church’s teachings.” I’m not blessed to know anybody specifically with autism, and so I turn to you and wonder if you think it is possible for an autistic child to be “cured” through religious teachings. The article in the New York Post also mentions that the Travoltas continually “denied speculation that their son exhibited autistic symptoms” and a result failed to seek treatment or evaluation for their son, instead attributing his symptoms to Kawasaki syndrome. The Los Angeles Times however reports, “there is no link between Kawasaki and seizures. However it is reportedly common for sufferers of autism to have seizures if they are left untreated.” This brings me to my last concern. If Jett was indeed autistic, the Travoltas could have taken initiative to use their fame and notoriety to catalyze support and awareness for the cause. Perhaps choosing not to “label” their son as being autistic was not to their advantage. I simply wonder whether there is a fine line between not desiring to label and stigmatize, and causing potential harm to the person you so love and cherish. Could this have been avoided?