|
Realizations
submitted by Debi Lewis, June 4,
2003
For more articles like this
visit
https://www.bridges4kids.org.
For so many of us, the brainwashing begins when our children are
quite young, occasionally even before their birth. Diagnoses.
Prognoses. It’s no wonder we learn to underestimate our
children. After all, we’re bombarded with information regarding
their potential (or lack thereof). We get it from the medical
profession. We’re fed it by educational experts. We go in search
of it online or in libraries. We even get it from friends,
family, and total strangers. Some of it is bound to stick. All
of it, regardless of the intent with which it was delivered,
limits our children.
Tucker experienced a prolonged anoxic episode at birth. From the
sheer length of time he went without oxygen, he was
unceremoniously moved from one side of the societal balance
sheet (future contributing member) to the other (perpetual
burden). With that move came a whole host of additional baggage
– cerebral palsy, cortical blindness, microcephaly, mental
retardation, developmental delay. Sound familiar?
If you doubt or question or resist, you become the parent in
denial. I resisted. I still resist. I am persistent in my
resistance. I have complete faith in the power of the human
spirit, a power that cannot be diminished by disability or
adversity. And while my belief in Tucker’s potential was miles
ahead of the pack, even I was guilty of selling him short.
I never fought the labels, for they were a means to an end. The
end being services. Yet with each utterance, each completed
form, those labels were making my son’s world smaller and
smaller. By the time I realized this, it was too late. Minds
were closed. Invisible “Do Not Disturb” signs hung over the
plastic expressions on the faces of teachers, doctors,
therapists, administrators, and even some family. Inclusion and
self-determination were now on the other side of a Great Wall
constructed of labels, bigotry, and indifference.
I had been battling for years to convince others that Tucker
could say “yes” and “no” using his eyes. This first entailed
convincing them that he had the ability to comprehend even the
simplest of questions. A precious few believed. Some pretended
to, just to go along. Most didn’t, including several who openly
scorned my assertions. You know the type.
Still licking my wounds from the latest beating, a due process
hearing in which Monongalia County Schools expended tens of
thousands of dollars to convince a hearing officer that Tucker
was little more than needy furniture, I happened to pick up a
People magazine in a doctor’s waiting room.
Flipping through, I chanced upon an article entitled “Second
Sight” which described an artist from New Jersey and how he’d
pioneered techniques enabling people with even the most severe
disabilities the freedom to express themselves through their
art. Able-bodied “trackers” followed the instruction of artists
with disabilities, using whatever method of communication
available. Some used a laser pointer to choose colors, brushes,
strokes. Others made their selections via a painstaking series
of yes-or-no questions.
The proverbial light bulb came on. Tucker had always favored the
creative arts. Without realizing it, we had been flirting with
this technique at home for several months, having Tucker make
all the decisions in the crafting of collages. He at least had
control over the end product. It was his creation, not that of
the teacher or the aide as is the case with those pathetic
hand-over-hand projects.
Intrigued, I searched out the website of Artistic Realization
Technologies (a/k/a A.R.T.). I read Tim Lefens’ book Flying
Colors. The rest, as they say, is history.
In a whirlwind of planning, I managed to arrange for an all day
demonstration at an upcoming conference for West Virginians with
disabilities and their families. While I was excited to share
A.R.T. with the conference attendees, I primarily wanted to
present Tucker with the opportunity to paint with professional
artists who were completely unfazed by labels, who expected no
less of others than they did of themselves.
We decided to give it a try first thing Saturday morning, before
the demo room got really busy. My anticipation was unbearable.
Tucker wasn’t in the mood. Fine, I thought, this is his show. It
won’t be enjoyable if it’s just another required activity.
Fighting the crushing disappointment, I agreed we’d return later
that afternoon. Throughout the day I watched in amazement (and
no small amount of jealousy) as both children and adults, with a
wide array of disabilities, blew away the fog of low
expectations surrounding them.
Late in the afternoon, Tucker finally indicated he was ready to
paint. My palms were sweaty. I hoped he couldn’t sense my
anxiety. A massive amount of planning and preparation had gone
in to this event. I wanted it to be perfect for him.
As if the Red Sea was parting, the demo room cleared out. The
aura of expectation was so thick you could taste it. Observers
who’d been in and out of the room all day chose to watch through
the window instead, giving Tucker his space.
The tracker never questioned Tucker’s ability to communicate.
She just accepted it and moved forward from that point. After a
very brief orientation, where I “translated” Tucker’s answers, I
took a back seat. Responding to her yes-or-no questions with his
eyes, Tucker directed the production of an extraordinary piece.
And he didn’t stop there. Next, wearing a headband to which a
laser pointer was attached, Tucker created a second, equally
impressive, work of art.
No one assumed he couldn’t do it, so he did. It’s really that
simple. Every aspect of the paintings was his – from the size of
the canvases to the colors to the brush size.
This from a child who the local educational experts had written
off as “profoundly mentally retarded.” They had testified that
there is no reason to include Tucker, because he is so far gone
that he doesn’t even realize he’s being excluded. Expectations
simply don’t get any lower than that.
Tucker now has a vocation -- the potential for a real
honest-to-goodness, income-generating career that he thoroughly
enjoys. Isn’t that every parent’s dream?
The team from A.R.T. – founder Tim Lefens and tracker Mary Beth
Hill – are true heroes in my book. Their methods have the
potential to break down the barriers facing all people with
disabilities.
Changing these perceptual paradigms is the first step on the
path to freedom. Just ask Tucker!
View pictures of
the process and finished art below -
click here.
Debi Lewis is “mama” to Tucker and his two younger siblings,
and wife to Jason. They reside in Morgantown, West Virginia.
|
