Late one night in 1952, when I was 12, I peeked into my 6-year-old sister's bedroom and was shocked to see my father, kneeling at her bedside, praying. Now this would be a common sight in many homes, but not in ours, as my dad was not a praying man or a churchgoer. My sister had just been tested at the University of Utah at the request of her kindergarten teacher, who saw how far behind her classmates she was. The testers told my parents that, due to a brain injury at birth, my sister would never learn to read or write, never grow intellectually beyond the age of about 3, never marry but she could be sent to the state institution if they wanted. For my parents, sending her away at 6 would kill them.
An answer must have come to my father. The next morning he wrote a letter to the editor of both Salt Lake newspapers.
"I am the father of a 6-year-old girl who is mentally retarded. She has nowhere to go to school and her future looks uncertain. If anyone out there has a similar problem, and would like to join forces with me to help these children, please call me at 3-5644.
He was a successful advertising man. My grandmother was horrified that my dad would tell anyone that my sister needed help. But the day the letter was printed, our phone started ringing. The voices, always in tears, would be saying, "Thank you, thank you for bringing this out in the open. My child is so lonely, and I've had nowhere to turn."
They met at the state Capitol. For their first project, they found an abandoned home in Fairmont Park, fixed it up and hired a teacher for their children. Soon they discovered that another parent, Alton Lund, in a southern county of Utah had formed a parents' group at almost the same time. By 1958, parents from most Utah counties met together and formed the Utah Association for Retarded Children.
What they accomplished in the following half-century is the stuff of legend.
While raising money from friends and groups such as the Rotary Club and Junior League, the ARC of Utah created sheltered workshops, supervised apartments and jobs in the community. Then the group convinced the state legislators that these children had the right to go to school, too. Utah was second in the nation to pass this law, right behind Pennsylvania.
By now, parents in all states had joined together to form the National Association for Retarded Children (now the ARC of the United States), which Margaret Mead called "the most effective voluntary action group in the country."
Although more than 1,200 mentally disabled citizens of our state still languish at home while waiting for a place in these services, Utah has come a long way (the waiting list in Tennessee numbers 5,000). On May 28, the ARC of Utah will celebrate its 50th anniversary with a breakfast at Hogle Zoo.If you or anyone you know has a child or adult with mental disabilities, you may want to drop by and thank them. Because there was a time, believe me, when there was nothing. Nothing but a desperate father on his knees, a few dozen courageous parents who stopped agonizing and started organizing and the good people of Utah who supported them.
Terrell Harris Dougan's memoir, "THAT Went Well: Adventures in Caring for My Sister," will be published in January by Hyperion Books.