This Story Was Originally Broadcast June 4, 2004.
Doug Forbis is accustomed to questions about his appearance. He handles them with aplomb, especially if they come from children.
"The adults … give me weird glances but they don't say anything, so I don't bother," Doug said. "But with the kids … I was at the mall one day, and this kid walks by me and says, 'Hey, Mommy, he cut his own legs off.' I almost fell out of my chair laughing … It's probably something I would have said when I was little."
Doug, 17, was born with sacral agenesis, which experts believe affects between one and five children out of 100,000 in varying degrees of severity. "Sacral refers to the spine and agenesis is the absence of," said Jean Brown, a registered nurse practitioner at the Shriner's Children's Hospital in Greenville, S.C. She's known Doug since his infancy. Simply put, it means that all or part of the lower section of the spinal column has failed to form.
Thriving With Humor and Heart
Because Doug's condition was among the most severe, his legs were useless, and a doctor recommended they be amputated so Doug could learn to move without being hindered by them. The amputation was made high on his torso. His pelvis tilts beneath him, and sometimes gives the appearance that his body ends at his rib cage.
His arms extend beyond his torso, and he uses them to move acrobatically from place to place.
That is why his appearance is considered remarkable by people who see or meet him for the first time. He can be blunt about the questions he inevitably gets. Sometimes, he directs his pointed sense of humor at himself.
"I can get anywhere anybody can. And a lot of times I can get there quicker because I've got [a wheelchair]. I get good parking. I don't have to worry about shoes and socks. It's great. Everybody's like, 'I feel so sorry for you.' And I'm like, 'Why?' There's no reason to."
"What he doesn't have in a physical body, he makes up for with his intelligence and the heart of a lion," said his coach, Doug Kiley, an internationally known wheelchair athlete.
In fact, the intelligence and heart that won the respect of Kiley adds up to a rare kind of charisma that quickly becomes the focus of Doug's story, whether you find him on a basketball court, at a track meet, with his friends or with kids who fall under his influence within minutes of meeting him.
Buoyed by Rock Lyrics
One of the ways in which he looks at life is through the catalog of song lyrics that he keeps in his head.
"My parents always hear my music and say, 'How can you listen to that crap? All they do is yell.' But I don't hear the yelling. I hear what they're yelling." Quoting a song by Linkin Park, he added, "I hear: 'In the end it doesn't even matter. The journey's more important than the end or the start.' And they may be yelling it, but that's a very valid point."
What Forbis has become — including the goals he will take with him to college next fall — wasn't what doctors had predicted on the day he was born in Spartanburg, S.C., in 1986. Instead, his parents were blindsided by the response of one physician.
"The first thing I remember [the doctor] saying to me … is, he just shook his head and said 'Bad, very bad,' said his mother, Alisa. "And that kind of sticks in my head, you know."
Parents Faced Difficult Decision
He was the third generation of his family to bear the name Doug Forbis. His father, Doug Forbis Jr., said, "I named him right there in the hallway outside of the intensive care unit. But I told my father … 'I'm not naming him after you, Dad, I'm naming him after me.' "
Doug has an older sister who was born without complications, so his parents didn't know what to expect until he was examined at the Shriner's Children's Hospital in Greenville. That's when they received an accurate diagnosis.
One of the first decisions his parents had to make was also one of the hardest.
When a doctor recommended the amputation of Doug's legs, Alisa said, "It took me until he was almost 2 to say, 'OK, we'll do it.' "
One reason the amputation was made high on his torso was to allow for the possibility of adding a prosthetic device with which Doug could stand or even walk.
But Doug rejected the idea.
"I used to always just think, OK, I don't have legs," he said. "Big deal."
He also has friends with the same disability whose parents did not choose amputations. "They're always complaining about how their legs get in the way," he said. "I will honestly thank my mom for making that decision for me, because I think if I was 17 and trying to decide, I wouldn't be able to. But now I have a higher quality of life because my parents made that decision for me. I can just walk on my arms and get anywhere I need to."
Since kindergarten, he has gone to public schools, and his mother says there's not much the schools have had to do to accommodate him. "He's never really needed much. He's just kind of there and does his thing like anybody else."
"He was always a happy little kid," said his father. "He was always doing things that were funny, trying to get a laugh out of someone, even before he could talk."
That lifelong sense of humor is one of the qualities that has also helped Doug learn to move forward, including getting through some unpleasant periods in middle school.
"Whenever I got teased, I just came back with one of my own," Doug said. "There was this one kid who would mess with me. I told him, 'My arm span is taller than you are.' And he was like, 'What? … Come on, let's measure.' So I put my arm down. He only came up to my elbow. And I was like, 'See, I told you, get out of here.' "
He became a popular figure in high school. He's funny, knows music backward and forward, and has his own style of dancing, which he says he developed through sports. "I've always just hopped out of my chair and just done stupid stuff. I would always spin around on my hands and start break-dancing.
"The dumbest thing I ever did was, I put my chair on its side, I sat on the wheel, I got people around me to spin me … I fell off and ended up with a big gash on my head."
Athletics Give Him Focus
But with all the ways he has learned to adapt, Doug says the turning point in his life was when he became involved in competitive athletics. He says it gave him focus. It also gave him an idea of what he'd like to do in the future, as a coach. He plays basketball on a team for wheelchair athletes recruited from his South Carolina region.
"He's not our best player," said Kiley, "but he's like the nucleus of this team, you know. He's the glue. Track is his actual star-performing sport … and when he's in that racing chair, he is poetry in motion."
In fact, Doug has competed internationally in Australia. He placed third in the 100-, 200-, 400-, 800-, and 1,500-meter races, and won the 50-meter backstroke, breaststroke, and freestyle in swimming. In a national competition in Connecticut, he placed first in the 100-meter race, and third in the 200-, 400-, 800-, and 1,500-meters.
But one of his most impressive achievements is in the respect he has earned from the younger children he counsels and assists — when he helps train them to play basketball, for example. It's where the charisma he has developed is put to its best use, in dealing both with children and their parents.
Working to Change Minds
To parents who are reluctant to allow their wheelchair-bound children to compete in athletics, he says, "I'm in a wheelchair. I don't have legs and I'm playing basketball. This kid can play. … We'll teach him.
"My whole goal in life is to change those moms' minds."
Jean Brown has been impressed by the way Doug counsels children at the Shriner's Children's Hospital. "When he rolls in with his wheelchair they're kind of taken aback, because they say, 'Something's not right here.' And less than 10 minutes into it, they're talking and laughing. He just has a very good way with people.
"Doug gives them advice about life. He says … 'There's going to be an occasional jerk that comes along. Recognize that they're the jerk and not you.' "
Doug says he eventually wants to marry and have his own children, "but it's very rare to find someone open-minded enough where they can just treat me as a person. And not as a person in a chair."
"The fact that he has sacral agenesis does not mean that he can't father children," said Brown. "If he decides he would like to have a child, we'll probably go for a fertility workup to see. But I certainly wouldn't take that out of his future at this point in time."
Next fall, he plans to go to the University of Illinois — a school considered one of the hubs of wheelchair sports — where he was accepted after writing an entrance essay on what it means to him to be able to counsel children. He doesn't mind being called a role model. But he says he hates being called an inspiration.
"I'm not. I'm doing my only choice. The people who get hurt or are in a wheelchair — you have two choices. You can say, 'OK … I'm stuck with it. I can go live my life, have fun, no big deal.' There's no reason to sit in my room and cry.
"There's … a Limp Bizkit song, 'Life is a lesson, you'll learn it when you're through.' And that's something I believe in. I think it takes time for you to realize what's going on, for you to really learn it. And I'm hoping I get to that the point."