At first, the project was a way of staying occupied, coping with and fending off boredom.
But then the photographs began to come in, from people of all backgrounds, all around the world, eagerly responding to "this guy in a small New England town."
"The project became more than a goal to meet,” says Fred Siwak. "It became a window on the incredible kindness of strangers."
|This photo of a mother and child taken in a remote farming village near Yangshuo, China, is one of Siwak’s favorites. "This epitomizes to me a special aspect of the project — connecting with ordinary people, living their everyday lives in their hometowns, so remote, so different, yet a connection so basic to us living our everyday lives here in the U.S. It seems to transcend circumstance, culture, place."
A unique venture
In 2003, Fred Siwak sorely needed a window in his life. ALS, diagnosed in 1998 but probably dating to 1994, had confined him to his apartment in the small town of Ipswich, Mass.
Once an avid traveler, photographer and amateur artist, Siwak, 54, had seen all those activities slip away along with his muscle strength. Early in the disease he had been able to adapt by strapping chisels to his wrists and using body weight to carve out linoleum blocks for prints.
His work won top honors in local art exhibits, and a piece was accepted into the MDA Art Collection in 2002. When he could no longer chisel, he turned to computer art, painstakingly creating more than 60 pieces.
But by 2003, even his computer art ability was failing. He felt himself growing increasingly isolated in his apartment, where he lives alone, assisted around the clock by paid caregivers as well as family and friends.
That’s when a friend took a trip to India, "and the thought occurred to me that it would be neat if he would take a piece of my artwork there and bring back a photo of it," he says. "I liked the idea of getting my art 'out there,' making a statement, a connection."
Siwak also asked his brother and traveling friends to snap photos of his artwork in the countries they visited. Looking at his growing collection of photos, he realized he had hit on a new artistic venture — one that combined his love of art, travel and photography with his new mission of raising public awareness of ALS. He decided to challenge himself to get a photo of his artwork taken in each of the 194 countries in the world.
He called this unique venture World Art for ALS Awareness.
An amazing response
In the three years since he began his project, Siwak has garnered more than 1,500 photos from 172 countries. He goes online nearly every day, hooked to his BiPAP machine and typing with a mouthstick, searching the World Wide Web for new participants.
He usually e-mails his artworks to willing photographers who print them out, photograph them and then e-mail the photos back. Although he sends out different pieces, he favors "Butterflies" because it prints and photographs better and is universally recognized. The photos he gets back are almost as good as traveling, often showing local people in their everyday lives who have stopped for a moment to pose with one of his images.
"I think, 'Wow, there’s my art in Bangkok, at the Pyramids in Giza, at the very pole that marks the bottom of the Earth!'"
Siwak says one of the best parts of the project has been the amazing response of the people he’s found online.
- From Brazil: "Other people around the world will be your legs, your arms and carry part of your art."
- From Brunei: "I’d consider it a great privilege to help you out in this small way."
- A woman in Zimbabwe drove more than three hours to the nearest town with electricity and Internet connections to send photos to him.
A larger purpose
Siwak credits ALS with changing him from a "dabbler" to a serious artist. This project has led to a number of art exhibits, as well as displays at Virtual Tourist meetings (a Web-based travel community) in Canada and Australia.
And even as the project brings him personal joy and a sense of connection, it serves a larger purpose of educating people around the world about ALS.
"I hope this will bring more support to the overall mission of eradicating this disease," he says. "And hopefully it will be an inspirational example for others with ALS and other similar disability challenges."
Among the approximately 20 countries still missing from Siwak’s lineup are Angola, Burundi, Cameroon, Central African Republic, Comoros, Congo (Brazzaville), Equatorial Guinea, Federated States of Micronesia, Gabon, Nauru and Suriname.
To read an earlier article about Siwak’s work, see MDA/ALS Newsletter October 2001, New England Artist Lives Along the Scenic Route.