Raising a child with Down syndrome is remarkably like raising any
other child. When Nick first arrived we had to feed him, change diapers
and do all those infant things. Now that he’s older, he plays and
fights with his siblings, watches his favorite television shows and
has a GameCube obsession. Nick does homework, goes to soccer practice
and whines when he doesn’t get what he wants. He likes to stay up
past bedtime, takes pride in his accomplishments and values his family’s
love. Just like all children.
Nick’s Down syndrome does complicate our home life with what a
columnist once described as extra texture. But, within the confines
of our home, Nick doesn’t “have Down syndrome.” He is just Nick,
the youngest of our three children who has all the complexities
of a human being. Most of the time, we forget about his extra twenty-first
chromosome. Until we walk out the front door.
We do not believe the outside world deliberately creates an issue
of Nick’s diagnosis. But it happens anyway. Nick lives under society’s
microscope, with a sharpened focus on his perceived flaws instead
of his accomplishments. At school, on the soccer field, in the grocery
store people dissect his behavior. What will that boy with Down
syndrome do? Why is he doing this, or why isn’t he doing that?
Sometimes Nick meets expectations of “normalcy,” sometimes he exceeds
them and sometimes he falls short. But irrespective of his actions,
he frequently is prejudged as the “Down syndrome kid” who is different,
who can’t. He is viewed through Down syndrome-colored glasses.
People with Down syndrome deserve more. They deserve not to be
scrutinized. They deserve the chance to engage without prejudgment.
They deserve to be understood as something deeper than their medical
diagnosis. They deserve a chance to know and to be known. They deserve
a community that looks beyond their extra genetic material, to their
humanity.
It is easy to recognize even the subtle attitudinal barriers that
confront Nick as he ventures from the home out into the community.
But how do we address the problem? How do we encourage our neighbors
to get to know the person behind the label? We must somehow infuse
the outside world with the accepting attitude that dominates Nick’s
life inside our home. Is the answer more Down syndrome awareness?
Is it more effective education? Is it simply encouraging those in
our community to get to know our children as we do – as people –
through events like this evening?
We do not have all the answers. But we do know that obstacles clear
when people make the effort to really engage those that face unique
challenges. The disability seems to disappear from view, the strained
pronunciation fades, the uncomfortable feeling dissipates when one
makes the effort to meet the person.
We commend all of you for helping our community overcome its ignorance,
its fears and its misconceptions about those that appear different.
To paraphrase civil rights activist Johnetta Cole, perhaps one day
we will all embrace difference, respect difference and allow difference
to the point that difference does not make a difference. Thank you
very much for your support.
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