Last April, Ebert gave a 20-minute TED Talk – via a computer voice program and help from his wife and friends who read portions of the speech aloud for him – about finding his voice after his jaw deformity rendered it powerless. He discussed the surgeries, voice software and how people acted around him.
"It is human nature to look away from illness," said Ebert's wife, Chaz, reading his words on paper as he held her hand and nodded. "My ability to think and write have not been affected. And on the Web, my real voice finds expression."
Online, Ebert wrote about movies, but he also wrote about universal health care, acupuncture and how mourning changes with age. Often, he added personal anecdotes to his essays. He also had more than 833,000 Twitter followers.
Neuss said that as a physician, it took him a long time to learn how to look disfigured patients in the eye. He said people tend to look away because they think it's polite, but that's not the case.
"I think they like to be seen as the people they are inside the face of illness," Neuss said. "I think him [Ebert] helping us do that is important."