Journeying through genetics
By Debra Filcman/ Staff Writer
Thursday, October 12, 2006
Film documents man's investigation of life as a little person
Massachusetts native Steven Delano literally set his life to music.
A little person, Delano tried to live as "normal" a life as possible, never focusing on the science behind what many would consider a disability.
But in his 40s, he finally endeavored to find out which, of hundreds of forms of dwarfism, he suffered from.
An analysis of his genetic makeup revealed the answer: spondyloepiphyseal dyspasia - a mutation causing any of a variety of symptoms, including a short trunk, barrel-chest, myopia, retinal detachment, misaligned knees, decreased hearing, cleft palate, cervical spinal compression, a short neck and clubfoot.
The mutation, denoted by letters in his DNA, not only represented his lifelong journey, but also became the theme song for his recently released documentary, "No Bigger Than a Minute," which also features his cousin, Brookline Street resident Kristine Gagne.
"I used that sequence of letters as notes on a musical scale, and asked a composer to arrange them into a musical piece," Delano said.
After working for years as a film editor in Denver, Delano decided to put his own life story on the screen after an acquaintance's attempt to do the same never came to fruition.
And while he "ambushed" some relatives, including Gagne and his own mother, he was reluctant to take an active role in the film himself.
"He's a pretty private person, though you'd never know it if you watched the film," Gagne said. "When he first started working on it, he didn't even want them to take pictures of him."
Perhaps it stems, she said, from their overprotective family.
"Steven had detached retinas and when he would cross the room, we'd all yell, 'Don't trip, don't trip,'" Gagne said. "We were always so worried about him."
Nonetheless, Gagne said, in other ways, the family didn't see him as any different from his peers.
"He did everything we did - he ice-skated, he played baseball, he went sky-diving - he had a real can-do attitude," Gagne said.
The "Point of View" documentary features other dwarves who share that attitude.
From Peter Dinklage, star of "The Station Agent," and Meredith Eaton of "Family Law," both little people, to rapper Bushwick Bill and singer behind "Short People" Randy Newman, the film shows other people who share much of Delano's experience.
"It's really inspirational," she said of the film. "He doesn't like that word, but I don't care, it is."
The film will air Sunday, Oct. 15, 10 p.m., on WGBH.
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