The following featured entry was originally published by Tanis Miller on her weblog, Attack of the Redneck Mommy. She has become "...an advocate and pitbull for families and children with disabilities. She is very effective at scaring the medical establishment and government agencies into doing what is best for people with special needs. Shalebug so inspired the blonde with knobby knees and her husband with his love and grace they decided to adopt a special-needs child into their clan."
With Jumby’s arrival I am once again the parent to a disabled child. In the three years since I’ve been required to tube feed or face a plethora of medical professionals, there has been one aspect of raising a disabled child I hadn’t missed at all.
The stigma that is attached to a disability, to me as a parent of a handicapped child and to my child for being different.
I had forgotten how every time I venture out in public with my child we become the traveling circus, the free freak show for people to pointedly ignore or worse yet cast upon us their stares filled with pity and sorrow.
I didn’t have a choice when Bug was born. Whether I liked it or not, I was initiated into this odd club of parents, where all the members had different stories but one common link. They all had children who the world looked upon as different. They all had to face the looks of sorrow or pity whenever they told the world at large why their child wasn’t ‘normal.’
I didn’t want to be the parent to a different kid, dammit. I wanted to be the mother of the blonde haired, blue eyed baby boy I saw beneath the mask of his disabilities. I couldn’t understand why the world never saw him the way I did: As a remarkable little human being who was just like the rest of us underneath his broken body and mucked up DNA sequences.
Then I learned the secret most people never have the opportunity to discover. The sheer joy involved in having a disabled child in your life.
This time around the parental merry-go-round, I had a choice. I actively chose to bring home a disabled child of my own. I made a choice to deal with every aspect of parenting a special needs child. I signed myself up for the freak show that follows us wherever we go.
I don’t regret it for one second. Our family, our lives are infinitely better with Jumby in it.
But there is a difference with Jumby that is palpably noticeable. A shift in perception that wasn’t visible to our family when we were blessed with Bug’s life. My children were three years younger and a world less mature while Bug breathed. There were things about living with a disabled brother they never noticed because they were too young to remember life without him before he was born.
But death and puberty and time has swirled around them like the perfect storm and given them a clarity of life they once lacked. They see the difference between their bodies and Jumby’s tight twisted little body. They see how difficult it is for Jumby to get through the day as they run and jump and play and take their own healthy bodies for granted.
Even more so, they are keenly aware of people’s reactions to Jumby and to us when we take him out in public. It goes beyond the brown hair and his doey brown eyes. Beyond his cleft chin and the different noses on their faces. They are bonded with Jumby, united by the love the three of them share for one another and they don’t understand why people can’t see past his wheel chair or the way he holds his head to the side to see better, to see the spirit of the boy they so clearly see.
They have witnessed the social disparity between them and it’s left them cold.
It is a lesson I knew they’d learn but one I wish I could shield them from.
I can’t shield my children from this. Unless I choose to live in a bubble but let’s face it, it’s no fun to flash my boobs if no one is watching.
But I can stand up and tell the world to grow up.
To open their eyes and see past their own feelings and issues and take responsibility for their actions and the words they so carelessly toss around.
I can teach my children and the children around me that it is not cool to use the word ‘retard’ to make fun of someone or hammer a point home.
I can teach my children and the children around me that it is okay to touch a disabled person, they aren’t contagious or filled with cooties. (Unless they are homeless and living under a bridge and even then they just need a good de-lousing.)
But can I teach the world around me? The adults?
I don’t know, but I do know that when I’m on twitter I don’t need to innocently click a link and have this image staring back at me:
Surely there is a better way to prove the point you are trying to make than to disparage a community of already challenged people. And don’t tell me you can because you have disabled children yourself. That doesn’t give you a free pass to be ignorant.
How are you protecting and advocating for your family if you are perpetuating this stereotype?
This isn’t cool people. This is so beyond cool my head hurts.
Nor do I need to open up my email and find this in my inbox:
Seriously. Have you met me? Do you know I gave birth to that child you just made fun of? That I just adopted another who would easily become a caricature in someone else’s life if I gave them the opportunity?
I don’t need to read a joke about how it’s National Retarded Day and guess what? I’m it.
That is my family you are making fun of. It’s my sons, my niece, my father-in-law and my friend’s children.
And with a small twist of fate, it could be yours, the same way it became mine.
I can’t change the world or most people in it. The best I can do is set an example for my children and for those around me and educate them to the value a disabled child or adult can bring to a community and to society in general.
You may not agree with me and that’s cool.
It takes all kinds of people to make this world the wonderfully interesting place it is. But if you are going to disparage a community of people who had the misfortune to have more health or mental problems than you can shake a stick at, you had better be prepared for me to bite back hard.
I owe it to Bug, to Jumby, to that man who shuffles his gait down the street because his feet are badly clubbed.
But mostly, I owe it to myself. There is a difference, a line, between what is funny and what is pathetic and rude. I see the difference every time I look in my son’s eyes and see his smile illuminate brighter than a 100 watt bulb.
What I’m having a hard time with is trying to explain to my children why everyone else can’t see it as well.
Don’t make this harder for us, for me, for Jumby.
Or next time I won’t play so nice.