With only the use of his thumbs and his computer, Michael Phillips can create art. He can write reviews of games and chat with friends across the country. His latest endeavor: an online FCAT.
By LEONORA LaPETER, Times Staff Writer
© St. Petersburg Times, published April 13, 2003
Michael Phillips' mother pushed his stretcher-like wheelchair up to the desk of Gov. Jeb Bush.
Bush's aide cleared an ink blotter and a menorah from the governor's desk and set up Phillips' laptop. Next to it, a space heater was plugged in to keep Phillips' thumb warm.
Gov. Bush got behind Phillips and watched as the 22-year-old, who lives his life on his back and can move only his thumbs, pulled on a string with one of his only functioning digits to type letters on the screen.
Five years ago, Phillips fought the state for the right to take his high school competency test on the computer. He was meeting with Bush to urge that the FCAT be given and graded on the computer, changing the way students in the state take the test.
As Bush watched one day last winter, Phillips submitted answers for a sample Florida standard achievement test on his computer. Within seconds, the computer graded the test and returned Phillips' scores.
Gov. Bush looked around at Phillips; his mother, Karen Clay, a member of a state advisory task force on accommodations for disabled students; and officials with Vantage Learning, the company that wants to sell the state on providing the FCAT over the Web.
"Why aren't we doing this?" Bush asked.
At his apartment in South Tampa, Michael Phillips' computer screen is suspended over his head, just below a life-size picture of Alanis Morissette, stuffed monkeys on a shelf and a Japanese animation silkscreen.
Phillips' hand rests on its back on his mattress, seemingly useless. Then you notice his thumb tapping a small switch on a paperback-sized box so fast, the movement is barely perceptable.
On his computer screen, a trailer for a video game appears.
Then he accepts an invitation to play another video game involving dueling elves and skeletons.
At the same time, he's instant messaging four people at once: Andy in Seattle, Eddie in San Francisco, Tuncer in Calgary and Al in Rhode Island.
"How are ya?" he asks Eddie, a friend who works for Cisco Systems.
"Not too bad. Busy as hell since last week."
"How about yourself? Still dying?" Eddie asks.
"No, I'm in a spot of pain though."
"Ouch. That s----, dude."
Phillips has Werdnig-Hoffman disease, an inherited muscle disease that is characterized by a weakening of the signals from the brain to the muscles. Phillips has feeling in his body; he just isn't strong enough to move his arms and legs, and his muscles have wasted away. He must lie on his back so he can breathe properly.
His limbs are as thin as ropes. He uses a machine to pump oxygen to his lungs when he is at home. His mother turns his head when he needs to move, stacks his legs on top of each other like logs when he tires of having them supine on his bed.
"There's no sense being upset about things you can't change anyway," Phillips says about his condition. "I've always been this way, so I don't really know any other way to be."
What his 52-pound body lacks, his mind makes up for. He has become a computer game reviewer, a photographer, a digital artist, an advocate for the disabled and an AppleMaster, which puts him in an international group of elite Mac users that includes Lauren Bacall and Tom Clancy.
It is not uncommon for Phillips to spend 15 hours a day on the computer or to do six things at once. Sometimes, he reviews as many as four computer games a month for InsideMacGames.com.
"I can multitask," Phillips said.
He has so many friends on the West Coast that he is on Pacific time, rarely getting to bed before 3 and 4 a.m. He communicates frequently with a soy farmer in Nebraska, plays cribbage with a writer in the Netherlands. He gambled in Las Vegas on his 21st birthday.
Phillips estimates he can type 12 words a minute by hitting the edge of a switch -- he uses the string switch only when he's traveling -- with his thumb.
The switch sends a signal that starts the computer scanning through the alphabet. As it gets to the letter he wants, Phillips taps to select it. The scanner moves again, and Phillips taps again when he gets to the next letter. He does this without looking at the scanner. He knows how long it takes to get from one letter to the next.
He has accomplished so much with so little that he has caught the eye of such notables as Gov. Bush, David Letterman, Al Gore and former President Bill Clinton.
He has criss-crossed the country taking pictures of these men and other celebrities, including Siegfried & Roy, Dan Rather, the Pittsburgh Steelers and the New York Yankees.
Phillips, born in State College, Pa., didn't start to crawl or walk when other babies do and couldn't hold up his head. He was diagnosed with the disease when he was 9 months old.
Doctors told his mother that he likely wouldn't reach his first birthday. But Phillips was clearly a special baby. He could read signs for Burger King, McDonald's and other billboards on the side of the road by the time he was 1. He spoke in sentences at 18 months.
But the cold of Pennsylvania wreaked havoc on Phillips' pneumonia-prone lungs, and his mother decided to move to Florida when he was 2. That's when Clay parted ways with Phillips' father. Father and son have seen each other only once since then. Clay has another son, Brian, 20, a student at the University of Florida.
At Plant High School, Phillips was a straight-A student in the gifted program, a National Honor Society member and editorial page editor of his school newspaper. He got into photography and, with the help of his mother, maneuvered to the disabled seating on the Raymond James Stadium field to take action pictures with a camera mounted on his wheelchair.
But it was the computer that changed Phillips' life.
In 1997, Phillips asked to take his Florida High School Competency test using his $3,200 Macintosh Powerbook, which the school district had provided him. Hillsborough school officials said the state could not give the test in that format for security reasons; they wanted him to dictate his answers.
So Phillips and his mother went to state education officials. Days later, after Phillips' plight ran in media around the state, then-Education Commissioner Frank Brogan said accommodations would be made.
Since then, Phillips' computer has become an extension of who he is, his way of making friends and pursuing his interests. He attends the University of South Florida on a scholarship.
He uses the computer to create digital artwork, which can be viewed on his Web site, www.emacartist.com. Among the images are a translucent horse bucking on a brown cliff in front of an ocean; a pyramid that reflects on its sides the burning sky above it; a clock dial suspended in water beneath a dusky sky.
Phillips sells his images, and some have even been on display in the past at Tampa International Airport. But lately he's spending more of his time trying to get the FCAT test online.
"Our lifestyles are digital; we instant message rather than use the phone," Phillips said. "CD players are being replaced by iPods. We watch movies on DVD. So, why not embrace the future and implement a digital FCAT?"
Bush said in an e-mail that his staff was considering seriously Phillips' pitch and hopes to bring online testing one day to all children taking the FCAT. Grading the exams via computer could prove the most controversial part of Phillips' idea. He advocates doing even the essay portion of the test online. Critics worry that the artificial intelligence that would be used to grade essay questions could be inaccurate and promote formulaic writing.
"This will require being convinced that the technology has advanced concerning artificial intelligence to match the current system of human graders and that there is enough access to computers to make this new way of doing things a reality," Bush wrote. "The end result is that the test can be given later in the year and the results can be returned much, much quicker."
Though Bush is intrigued, the idea is far from reality. He said he had asked the Department of Education to explore a pilot project with the FCAT online for disabled students.
Officials with Vantage Learning, the Pennsylvania company trying to get Florida's FCAT online business, say the artificial intelligence that grades the essay questions is just as accurate as humans and would save the state $15-million a year. Phillips has been instrumental in getting that message to Florida's government officials, said Scott Elliot, chief operating officer of Vantage.
"Mike knows the scene," Elliot said. "But certainly people pay attention to Mike and he has been very helpful in getting peoples' attention at the government level, as well as at the Department of Education."
Elliot acknowledged concerns that an online FCAT could promote formulaic writing, but said that is a symptom of the test itself.
Phillips has talked with Vantage officials about becoming an adviser and helping the company pitch the product, though he isn't employed by them now.
Clay, Phillips' mother, is obviously proud of her son's ability to get the attention of people like Gov. Bush. But equally important to her is that her son is seeking to change things to help not just disabled children, but all children.
"So often we are left behind, but not this time," Clay said. "There's no one better to demonstrate the power of Web-based assessment than students with disabilities. It's their power."