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Not My Brother's Keeper
WHEN I WAS GROWING UP, things between my brother and me were pretty much the same. Not socially: kids and teachers picked on him, grownups pretended not to hear him, and he lost valuable time while in or recovering from one of his seizures. He was developmentally disabled, an epileptic with the added injury of a certain lack of mental acuity.
He was "different."
But at the end of every school year, he knew he'd go on to the next grade. He knew he'd live at my parents' house. He knew he'd ride his bike or play with his model cars.
When we did grow up, the disparity monster reared its ugly head. You see, I was going on to college. So were all my friends. We were entering adulthood, which meant personal freedom. We had big plans and our parents glowed with excitement for our future. We had graduation parties and college reconnaissance missions, and we basked in the warmth of our last summer at home.
All Poul had was a big question mark.
Junior college wasn't really an option, since school in the later years had become stressful. His memory wasn't getting better as adolescence and medication wreaked havoc on his system. And the idea of living with my parents for the rest of his life made us all ill at ease.
Looking back, the saddest thing of all was that we didn't know how anxious my brother Poul felt about his lack of options. We wrongly assumed he didn't understand the difference between his life and mine. But he did.
He still does.
For the first eight months of college, he lived at home. And then one day my parents called me, all breathless. They'd found an organization that might--I emphasize might--be able to get Poul his own apartment. TRACE, one leg of Becoming Independent in Sonoma County, specialized in special living situations for people with disabilities. If they felt he was a good candidate, he'd get an apartment with a roommate.
He was and he did, and life for Poul has never been the same.
Living on his own wasn't a panacea for all Poul's problems. It didn't make people see him--he's forever calling himself "invisible." It didn't make his seizures go away. But the pride he felt on his first big step toward becoming "normal" was palpable.
It was his reason for being.
Through the help of many, Poul got his first job. He learned to negotiate the bus system, to go grocery shopping, to cook. He took gigantic leaps toward independence. Now he decides if he wants to visit with family or relax at home, if he wants to go shopping or to the movies. He also makes mistakes and gets hurt and learns.
Most important, Poul is an active member in this adventure called life. As someone once said, it is a small price to pay to be civilized.
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From the June 20-26, 1996 issue of the Sonoma Independent
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© 1996 Metro Publishing and Virtual Valley, Inc.