Ed came across a posting from Aul on a mailing list which serves the parents of children with disabilities. Ed's 13-year-old daughter Johanna, who has multiple disabilities related to cerebral palsy, is a student at Southern Hills Middle School. Although Johanna is legally blind, is nonverbal, and cannot perform major physical functions like walking, she is expressive and aware of her surroundings. She can communicate to an extent through eye position, hand squeezes, and other physical cues.
Ed's struggle to get Johanna the tools she needs to live and learn--a task that includes taking her to California and New York for treatment and special equipment--has made him a staunch advocate for the rights of people with disabilities. That interest, along with his background in networking and the Internet, took him on line to the mailing list where he "met" Aul in October 1994.
|Aul Pedajas (left) and Maaris Altvälja|
Aul's posting on the Net was a plea for help. In Estonia's economy, hobbled by 45 years of Communism, Aul is provided one room in which to live but cannot pay enough to reliably keep a personal care attendant (PCA). Without a PCA, says Ed, Aul would probably be consigned to an institution. In Communist Estonia, institutions for the disabled were staffed by convicts. Institutionalization would mean the loss of Aul's computer, his link to the world at large and the only way in which he can have an independent intellectual life.
"It's obvious that his parents did the best they could under Communism," says Ed. "Getting him educated was no small feat. But I think he's lost a lot of physical function simply because he hasn't received proper care, and especially since the death of his parents and grandmother. In another country, he would probably be in better shape."
Through Ed and a Mormon-based charity in Estonia, Aul made connections with a family in Provo, Utah, whose parents fled Estonia in 1944. They agreed to house Aul and his 17-year-old PCA, Maaris Altvälja, for the start of their visit to the States. The two flew to Salt Lake City in October, where a new wheelchair with a reclining back was built for Aul. Ed met them in Salt Lake for the first time.
"When the Estonians arrived in Provo, Aul bought Maaris a nice sound system, which Maaris could not have had in Estonia. Aul accomplished this partly because he had sold a few possessions that had been left to him by his parents, following their deaths in 1991 and 1992. He's an open and generous person." BH
Ed, Johanna, and Aul were chosen for the project after Ed responded to a call early last year for human-interest stories pertaining to life on line. In two pages of text and photos, Ed and Johanna are pictured in Boulder and Aul in his native Estonia. In the article, Ed poses the question, "Do people with big hearts ever frequent the Net?"