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.
Tracker Mary Beth Hill (standing) asks Tucker Lewis (center) how he’d like to begin. A.R.T. founder Tim Lefens (kneeling) looks on.
Tucker chooses to begin with a circle. Mary Beth asks Tucker to indicate its center point.
Center selected, Mary Beth next asks Tucker to indicate a point on the circle’s outer rim.
Tucker chooses black, and Mary Beth fills in the circle Tucker chose. 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.
The end product.Tucker's first work on canvas, entitled "Realizations."
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.
Tucker’s second piece, entitled "Purple Heart," was created using a laser pointerattached to a headband. The tracker chases the lightwith the paint, using the colors and brushes selected by the artist.
(Don’t you just love the heart shape right in the center?)
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 that he thoroughly enjoys, and the potential for a real honest-to-goodness income-generating career. 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!
~ Debi Lewis
Morgantown, WV
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