UCAR > Communications > Staff Notes > January 1997 Search

Ed and Aul: Just another day in the life of cyberspace

How did the lives of an SCD software engineer and a profoundly disabled man in Estonia become entwined? The story is an illustration of Ed Arnold's caring, Aul Pedajas' resiliency, and the power of the Internet.

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 physical limitations from spinal muscular atrophy are perhaps even more severe than Johanna's--the only muscles he can fully control are breath- and speech-related--but his mental capacities are very much intact. Aul speaks five languages fluently, including English, and holds a bachelor's degree in mathematics. Using voice recognition software to operate the computer that was given to him by a religious group, along with the account donated to him by Nosper Ltd. (Estonia's major Internet service provider), he can navigate the Net with skill.

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.

Ed Arnold

Earlier this month, Ed returned to Utah to bring Aul and Maaris to Boulder, where they will stay with the Arnold family for an undetermined length of time. Aul's visa expires in April and can be extended only through conversion to a student or work visa or marriage, all of which are unlikely. "It's obvious that advocates like myself could help to improve his situation in Estonia more easily than we could here, because of the exchange rate," says Ed. He's now working on line to try to establish an independent living center in Estonia to ensure that Aul and people like him have more of a say in their living conditions and ways in which they can be included in the society for work and leisure.

"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

At your local bookstore (and the Smithsonian)

Ed Arnold, his daughter Johanna, and Aul Pedajas are featured in 24 Hours in Cyberspace (Against All Odds Productions). The profusely illustrated book, released just before the holidays, is one in a series edited by Rick Smolan in which a team of photographers sets out to document 24 hours in a single location--in this case, the virtual world of the Internet and its people on 8 February 1996. The stories and photos in the book are on exhibit at the Museum of American History in Washington, D.C., from 24 January through 17 April.

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?"

In this issue...
Other issues of Staff Notes Monthly


Prepared by Jacque Marshall, jacque@ucar.edu, 303-497-8616