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Saw this on another list and thought some of you might appreciate it. Sure
hit home for me, this child even has the same name, age and disability as my
son. And, going to the grocery store is always an adventure with special
needs kids!
(BTW, the settings for the listserv have been changed. So remember, when
you reply a message, it should go to the whole list.)
Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com
"Look Into My Eyes"
By Judy Winter
My son and I stood in the frozen-food aisle of our favorite grocery store,
trying to decide between Double Chocolate Chunk and Mackinac Island Fudge
ice cream, when a woman suddenly appeared and quickly stole our playful
mood. "What's wrong with him?" she rudely inquired, as her young daughter
perched precariously on the back of their overflowing grocery cart.
The 'him' she referred to was my ten-year-old son, Eric, whose cerebral
palsy requires use of a wheelchair. The question was intrusive and
demanding, and the stranger who asked it wore a pained expression that said
more than her stinging words ever could.
It wasn't the first time I'd been asked this question. After a decade of
parenting a child with cerebral palsy, I've found many people are surprised
to discover that people with disabilities move among us, even visit the
grocery store. Such individuals often embrace a profile of the disabled as
someone who's poor and abused and ultimately, miserable. A happy, attractive
and well-adjusted child moving about freely in society creates an image they
can't easily digest. Unfortunately for my son, these individuals usually
avoid looking into his eyes and speak to his wheelchair, in order to
maintain the distorted image they hold of the disabled.
"There's nothing wrong with him," I said honestly, offering a brief
explanation of Eric's special needs. The woman paused, trying to make sense
of what was fast becoming an uncomfortable encounter. "It's a shame, because
he's so cute," she said, before delivering her final blow. "I don't think I
could stand having a handicapped child." Then, she turned and walked away,
her young daughter wailing loudly for the green slime Nickelodeon bars
they'd left behind.
I shook my head at the uninvited intrusion that threatened the priceless
moments of normalcy I'd created for my son. I may never fully understand why
people think they own the right to ask intrusive and private questions of
strangers with disabilities. Each time I try to put aside my son's
challenges and embrace his life fully, someone reminds me that in their
eyes, he falls short.
It's tough to parent a child with a disability, but negative societal
reactions and stereotypes make it much tougher. My son's cerebral palsy
makes it difficult for him to eat, and when he's tired, he may drool. He
only recently learned to sit up unassisted for short periods of time, and he
experiments loudly with developing speech. Appearing in public invites
unwelcome stares and thoughtless comments from children who are simply
curious, to adults old enough to know better. We face significant daily
challenges ranging from handicapped parking violators and educational
roadblocks to blatant discrimination.
Still, nothing stings more than the unwanted attention of strangers loudly
misjudging my child.
The fact is, I neither want nor need your pity, because when it comes to my
son, I don't feel shortchanged. In all his glorious imperfection, Eric has
been my greatest life teacher. He's taught me to elevate parenting above
career and self-interest, to judge less and forgive more, and freed me from
an increasingly competitive world of organized sports for young children.
He's taught me to listen when communication goes beyond words and his
physical challenges demand I stop long enough to savor shooting stars and
fireball sunsets. He's made me a more honest journalist, and when he
struggles to say, "I love you," he commands center stage.
Sometimes I sneak into his room late at night to marvel at his perfect body
in slumber. It's the only time I pretend things are different.
If you must feel sorry for me, do it because I must constantly work to
ensure a good education for my child while the schools and State battle over
special-education funding. Or because lack of public accessibility means my
family must cart a heavy wheelchair down steep stairs to view a magnificent
waterfall. Be outraged because statistics proclaim the odds of my son
graduating high school are dismal, and resources to assist families with
this tremendous parenting challenge are woefully inadequate. Be angry
because too often I must explain my son's value to professionals who should
know better.
But don't pity me as a mom, because I can't imagine having a better son. The
reality is the real difference between us is circumstance, and circumstances
can quickly change. Just ask Christopher Reeve and Michael J. Fox. Recently,
I listened as a dynamic motivational speaker and children's book author
spoke before an audience of elementary students and their teachers. The
author, who has cerebral palsy and uses a wheelchair, has achieved success
only dreamed of by many of his able-bodied peers. As I watched a young
teacher cry openly over what she perceived as the man's awful fate, I was
profoundly saddened. This young educator, entrusted with molding the futures
of all children, pitied him, even after the charismatic speaker gave her so
many reasons to celebrate his existence. By predetermining his societal
value, she was blind to all he offered.
The woman in the grocery store wasn't the first to rudely intrude upon my
day, and she won't be the last. Usually I welcome a stranger's questions as
an important opportunity to educate the public about individuals with
disabilities. But sometimes, I just want to buy ice cream, like everybody
else.
If you see our family in public, feel free to ask questions that educate you
about the disabled, but keep the intrusive and rude comments to yourself.
Depending upon the day's challenges, your assessment of my parenting
situation might be right on target.
Maybe I have been given an unfair parenting role, one lacking in any
significant parenting rewards. Maybe I even deserve your pity. Maybe not.
_______________________________________________________
Trachties Listserv is part of Aaron's Tracheostomy Page
http://www.tracheostomy.com
More information about this listserv at:
http://www.tracheostomy.com/listserv/index.htm
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