Tuesday, May 1, 2007

Metamorphosis: Blogging Against Disablism

dig·ni·ty (dĭg'nĭ-tē) n. pl. dig·ni·ties
1. The quality or state of being worthy of esteem or respect.
2. Inherent nobility and worth

I have come to learn that this is what its all about. It wasn't always this way for me.
A little over 2 years ago, my oldest son was diagnosed with autism. At first, this was a tremendously wrenching event for my wife and I. Until that point, I had never come face-to-face with disability. Aside from the occasional encounter with a disabled person, I lived in a disability-free world. I was a disablist by default, without even knowing it. I had never even taken a bare moment of my life to consider disability seriously. Prior to judging me harshly for this admission, read on. It gets worse, and it also gets better.
On the drive down to Children's Hospital for the developmental evaluation recommended by our pediatrician and the speech therapist, I was accompanied by my just-turned-three year old son. On the drive home, a mere 5 hours later, the spectre of Autism was strapped in the carseat behind me; silent, brooding, thieving the child my wife and I had conceived. Around me, on the busy highways of Southern California, thousands of people were going about their business on a typical sunny day. Meanwhile, I had been given the herculean task of raising a "disabled" son.
And so began my metamorphosis. Little did I know at that time, in January of 2005, that my eyes would be opened to a world that had existed around me all my life, immediately within my grasp, but that I had not been aware of. The metamorphosis did not begin immediately. The initial shock was quickly supplanted by a predictable episode titled "OhMyGodWhatDo WeDoNow!" We filed with the state for services. We contracted with an agency for behavioral therapy. My parents immediately became involved in trying to help. We were referred to friends of family who had experience with autism. On and on it went. We were reacting to the autism, we believed that our family had the power to defeat this thing that had infiltrated our heretofore "innocent" lives. This went on for months, and I do not regret what was accomplished in terms of Jason's well-being (he is a very happy child who is thriving in so many ways) But what I did not realize was happening concurrently, and was most profound in framing all of our future endeavors regarding my autistic son, was that I was undergoing a metamorphosis. And here is the epiphany my wife and I had that led to this awareness:
My son was born possessing dignity. He possesses "the quality or state of being worthy of esteem or respect". Autism did not change this. I, in my ignorance, allowed my perception of him to change in the few short moments it took for a psychologist to utter the words "diagnosis: autism". My son did not change in that moment - I did. And I will live my life regretting my brief lapse into self-pity. I momentarily robbed him of his dignity. Thank goodness I have recovered, and returned his dignity to him. Can you imagine the devastation I could have caused him had I not changed my views? He is a real person, and he deserves a father who appreciates and respects him for who he is. I grew up under the guidance of two parents who stubbornly and openly valued all I had to offer, no matter my shortcomings, and it is chilling when I realize just how close I came, however briefly, to robbing my own son of that same benefit. My metamorphosis in my views of "ability" vs. "disability" is one of the most profoundly positive things that has happened to me. And to whom do I owe the credit? To my son, Jason, who will someday understand that he has done as much to raise his father as I will ever do to raise my son.
Prologue: On Friday last, my wife and I took the boys to the local pizza place. As we were fighting the dinner table battles commonly found in a family with two young boys and an infant ("No, pepperoni is not a frisbee!" or "Sometimes lemonade is pink, please drink it anyway" or "The baby is too little to eat a meatball"), in walks a man with his wife. This man was missing both his forearms - in their place he had prosthetic limbs. What was far more noticeable about him was his booming laugh and big smile. I do not believe he knew anyone in the restaurant, yet he stopped to chat with a few people on his way to the counter. A few years ago, I would remember the limbs, not the laugh. I would have unintentionally robbed him of his dignity before he ever had a chance to say "Hello" to me.
This post is my submission to join the effort for Blogging Against Disablism Day. Thank you to all my fellow bloggers for helping to protect the dignity of my son.


mcewen said...

It's a steep learning curve but we're all getting there - we parents that is to say.
Best wishes

Lisa/Jedi said...

Thank you, Steve- for sharing this powerful transformation with us! I love the idea that your son is raising you, too. I know my kid is doing that for me as well :)

Another Autism Mom said...

What a beautiful post, I'm in tears. It's as if you were describing my own experience.

I always thought my autistic son had so much dignity, beauty and personality, from the time he was born. I remember looking at that baby in the Moses basket and feeling so much respect for him as a human being. Now, as a toddler, he has this "cool" quality that draws people to him. I don't know if he'll always maintain his charisma as he grows older, but I hope most people will see and respect him for his abilities and unique traits.

Imperfect Christian said...

I love the idea of our children raising us. My disabled daughters are adopted so my experience has been different from yours in some ways. But they do, they raise us in so many beautiful and meaningful ways!

Anonymous said...

Your post was deeply touching; profound in it's insight and lovely with eloquence. Your son has done a spectaclular job raising you and one day he will be proud. Very proud.

My daughter has raised me as much as my own mother has. It was a bit different for me as she was received her diagnosis at birth which meant she was robbed of her dignity the moment she took her first breath. Who stole this from her? In many ways most of did, but I was the most guilty. It took me the longest to see her for her and not her diagnosis. But I guess that is just one of the pitfalls of raising a parent.

Thank god she didn't give up on me :)

Attila The Mom said...

What a beautiful post. Thanks so very much for writing this.

Steve D said...

McEwen - It's more of a process than an event, isn't it?

Lisa - I know what you mean about wondering what the future holds. I am confident that Jason has as good a chance as my other boys of leading a fulfilling life. After, being NT is certainly no free pass to happiness either.

Autism Mom, Imperfect, and Emily - Its nice to know other people view this as I do. A sense of community, you know?

Atilla (great name) - You're welcome. Thanks for reading!

neil said...

I think I was lucky, for after the tears of the diagnoses, never for one minute did I think of our daughter as autistic - she just was who she was and autism was a part of her, but it wasn't her. I'm glad you wrote about this because it's an important step in being able to move on.

Club 166 said...

Great post, Steve.

Like others, I also liked the 'your son is raising you' part. I feel my son has contributed a lot to raising my consciousness and awareness.

He has made me a better man, and I can only hope to return the favor.

Sharon said...

That's a very moving post. My son has propelled me to learn and grow too. That's no bad thing! It's all this stuff of life and learning how to deal with it that made me choose my blog name.

Another Voice said...


This is one of the best posts I have encountered on the web in a very long time. Thank you for sharing. All parents grow up with their children, a Dx just shortens the amount of time you are permitted.

Heidi said...

ditto from me. Beautifully written, and described so well what we have just gone through. We, too, jumped on the recovery bandwagon, listening to friends of friends of friends who shoved websites and 'research' in front of us. Luckily this only lasted a few months and we recovered, from 'recovery'. Our son is teaching us so much about humanity, life and love. He is not a label, he is Sami and perfect the way he is. Thank you for sharing.

Steve D said...

Thank you all for your very nice comments. Isn't it amazing how perceptions can change so suddenly due to unanticipated circumstances?

Another Voice said...

We need many more perceptions to change and arrive at or near where you landed.

Daisy said...

Thank you for sharing your thoughts and feelings. It's amazing, isn't it, how much a disability in the family can change your outlook on the world!

MyKitchenInHalfCups said...

There is always the opportunity for us to experience success (or failure) when we live through our children's developmental milestones. But it requires something of an adult and one who is alive. Alive, I mean, really living life and engaged in it otherwise the lessons are lost to everyone.
I think that's what you're calling your son raising you. I once had a professor tell me the parent who truly loves their child is the one who loves and appreciates that child for the individual that they are and not who they think they want them to be. Not always easy to keep our expectations out of the way. Seems like you're doing a beautiful job. Congratualations on a son leading the way!