Thursday, April 15, 2010
Andreas Brandenberger sets his Boulevard Pale Ale on the table, kicks off his right sandal and clasps the pool cue between the ends of his elbow-length arms. Illuminated by beer signs and the light hanging over the pool table, he carefully applies blue chalk to the cue tip and then sprinkles baby powder between his first two toes.
Planting his left foot on the concrete floor and his right foot on the edge of the green felt table, he rests the cue between his powdered toes, pinches the butt end with his arms, aims and then smacks the cue ball into the triangle of balls, scattering all 15 of them.
Andreas Brandenberger, a senior from Baldwin City, has phocomelia, a rare birth disorder that causes severe defects, especially in the upper limbs. However, Andreas has learned unconventional ways to play pool, drive a car with a manual transmission and live his life.
Pool isn’t often a spectator sport at Astro’s, but Andreas draws stares and whispers of onlookers who haven’t seen someone play with his feet. But Andreas, a senior from Baldwin City who will graduate in May, had to find unconventional ways of doing many things. He was born with phocomelia, a rare disorder that left him with no thumbs, wrists or forearms, and two partial hands with only two digits on each. There could be potentially thousands of people in the world with this condition, but as far as Andreas knows, there are no other KU students who have this.
In a world designed for people with four fully formed limbs, Andreas has learned to use his feet and shortened arms to send text messages on his iPhone, drive a 1998 Chevrolet pickup with a manual transmission, pick up items with his toes and open door knobs with his foot. He has excelled in soccer, where strong legs are essential and using your hands is banned, and in wrestling, where he developed a tantalizing scissors move with his legs. Those same strong legs will take him through the Campanile and down the hill in May when he will receive a bachelor’s degree in general studies with a concentration in economics.
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Andreas in his own words
Comfortable with his condition in most situations, Andreas is ready for graduation and what comes after.
“Everything we take for granted is something he had to adjust to at some point: tying his shoes, driving a car, using utensils,” said Emery Baughan, Andreas’ best friend since elementary school. “He learned with what he had.”
* * *
From the time he was adopted and brought to Kansas from his native Greece to college graduation, Andreas can say that he has never been given a free ticket in life, except when he was adopted by a family with five children and embarked on life in America.
Twenty years ago, Chris and Bill Brandenberger traveled nearly 6,000 miles across the Atlantic to Athens, Greece, where they signed paperwork for their sixth child, Andreas. Before leaving for Greece, they carefully chose toys to bring that would not frustrate a 2-year-old boy who had no hands. When they first saw Andreas, he was sitting on the floor neatly stacking pop bottle caps, one on top of the other.
Chris and Bill looked at each other in awe.
“To see that little guy with no arms stacking bottle caps at that age, it was amazing,” Chris recalled.
That suitcase full of toys they had carefully selected for Andreas was given away the next day to other families who were adopting babies. Bill, a physician at Watkins Memorial Health Center, told his wife they should never tell him about the toys because they knew he could handle more complex toys.
They got to know Andreas by taking him outside and walking around the beautiful trees and pathways that surrounded the orphanage. Bill would buy Andreas pop and ice cream from the shop across the street. Their first thought was that they could all share one pop because the 2-year-old couldn’t handle a whole one.
“Boy, I’ll tell you, he had that pop can, and he wasn’t sharing that pop with anybody,” Chris said. “He could hold onto that pop while getting into a stroller with very little help, not spilling a drop.”
* * *
Growing up in his new home in Baldwin City with five other children, Andreas’ phocomelia didn’t play a role in how his siblings treated him. If he asked his brothers to get a glass out of the cupboard for him, they would point to a chair and tell him to climb onto it and get it himself.
“We definitely didn’t cut him any breaks,” his brother Joe said. “There was never really a discussion about that, and we treated him as if there was nothing different about him.”
Amanda, Andreas’ sister who is closest in age to him, said that family and friends never considered him to be physically disabled or to have a handicap.
Andreas never contemplated it either.
“I joke with my friends that I am ‘handi-capable,’” Andreas said. “There are too many fun things out there that I want to do, and there is no way in hell that I am going to let something like a ‘handicap’ slow me down.”
His parents took the same approach.
“I think kids need to have their bumps and get up on their own,” Bill said. “He tended to do that on his own, so it didn’t require much effort on our part.”
Chris recalls one time when she had M&Ms for the kids, and they all came running into the room with their hands cupped to get their share. Dumping handfuls of the chocolate candies into each child’s hands, she went right down the line. When she got to Andreas, M&Ms scattered all over the floor. While his siblings laughed at their mother, Chris immediately said, “Oh wow, I think you need a cup, Andreas.”
Phocomelia is rare enough that the Centers for Disease Control and Prevention, and the Genetic and Rare Diseases Information Center don’t have compiled data on those living with the condition.
Researchers thought phocomelia was possibly caused by thalidomide, a drug that was prescribed in the 1960s to treat anxiety and morning sickness in pregnant women. It was mostly given to women who lived outside of the United States.
Because Andreas is adopted, his family does not know the direct cause of his phocomelia.
Living in a family with five siblings who are all older than him, Andreas couldn’t hide from the tough love or pranks siblings play.
As Joe recalled, “We had a banister over the stairway in our three-story Victorian-style home, and at one point in time, Will and I got one leg each, and we were hanging him over the balcony.”
They still tease him to this day by threatening they’ll shake him down for his school lunch money.
It didn’t stop there.
While Chris and Bill were inside the house brainstorming how to tweak the handlebars of Andreas’ new bicycle to make it easier to ride, his oldest brother Will had other ideas. He knew it was time to put Andreas on a bicycle and push him down the driveway, as Will screamed, “Pedal, brother, pedal!” And Andreas did.
From then on, the Brandenbergers knew Andreas would always do more than they expected.
“Maybe the bicycle incident was the big awakening for us where we realized he would always be two steps ahead of us,” Chris said.
Andreas was a master of his own fate. Life was in his own hands, such as they were or weren’t.
Family and close friends of Andreas understood.
His best friend Emery Baughan explained, “If you put limits on what someone can do, then they can never show their full ability, and they are shackled by others’ perceptions.”
In elementary school, one of his teachers realized that the arduous writing exercise of a young and determined Andreas would run into recess. She quietly patted him on the shoulder and let him know that if he did half of his sentences, she would be satisfied and that he could go out to recess with his classmates. Andreas turned, looked up and said, “I will do what the other children do,” and continued squeezing his pencil tightly, guiding it across the lined paper.
The teachers in Baldwin City learned to take a step back and let him run his own show. He might have asked for extra time to write so that his muscles didn’t cramp from squeezing the pencil, but his physical limitations never hampered his learning.
He didn’t need more one-on-one attention to study, but physically things sometimes took a bit longer for Andreas.
For his own reassurance, his friend Emery was placed in every one of Andreas’ classes until junior high. Emery was his security blanket.
* * *
Something that sounds so trivial as learning to tie your shoelaces is a landmark of development for children. Andreas was well into elementary school before he learned how.
“Everyone always did it for me, and I kind of accepted it,” Andreas said.
It didn’t come as easy for Andreas with his athletic shoes, but it is second nature to him now.
Another milestone was getting dressed without help. Andreas was at a disadvantage when he wore jeans because without thumbs, zippers and buttons were difficult to grab.
Amanda remembers sitting in church and watching Andreas dig through his pocket for quarters, dimes and pennies, thinking that it must be really difficult.
“His greatest handicap is in the eye of the beholder,” Chris said about her son. “We had a lot of people tell us that down the line when he was a teenager, things would really be bad for him, but he has made a liar out of anybody whoever tried to predict anything.”
It was Chris’ natural instinct to stand by her child and hope that his strength of character would allow him to move forward in spite of his condition. She would have given anything, including one of her own arms, to erase his “handicap,” and sometimes his struggles hurt, but she knew she couldn’t coddle him.
“We wanted him to stand as tall as he could and be a man and not have to look to see if there was someone to lean on,” Chris said. “Certainly anybody who knows Andreas can say that he certainly stands tall. He made his own way in the world.”
Amanda recalls family vacations to the Grand Canyon, Wyoming and Mesa Verde when children would just stand and stare at her brother.
“I would start to feel a sense of relief when the parents would come over and, I thought, to get the child, but oftentimes the parents would just come stand and stare as well,” Amanda said.
Andreas remembers kids making fun of him, but he tried to ignore them, not because they were bad, but because every kid gets made fun of at some point in his life. His arms just made him an easier target.
While some teased him, others were simply curious and asked blunt questions about his shortened arms and four fingers.
“No matter if you’re 10 feet tall, if you’re 2 feet tall, if you’re fat, if you’re skinny, they are going to ask you a question, and I just happen to have something that is different from most kids,” Andreas said.
* * *
It was hard to keep Andreas away from a soccer ball. Beginning in elementary school, soccer became Andreas’ favorite sport. His feet and legs were as good as his teammates’ on the soccer field. Emery and Andreas played soccer together until they parted ways for college, and one memory stands out for Andreas: the time he was called for a hand ball in high school.
Some referees wouldn’t call it because they weren’t sure how to approach calling a hand ball on a player who didn’t have hands. But this time, as the ball grazed his arm, a referee made the call.
As Andreas recalled, “Emery went off on the ref and said, ‘How the fuck is that a hand ball? He doesn’t even have hands.’ I knew he wasn’t being mean. He was just arguing the fact that we didn’t want to lose possession of the ball. He ended up getting a yellow card for arguing, which I thought was quite amusing.”
Just as it is at any high school, sports are important for boys at Baldwin High School, and Andreas struggled to find his place in football and basketball, the major sports.
Kit Harris, Baldwin’s wrestling coach, noticed Andreas’ athletic ability in a physical education class and decided to reach out to him and his parents. He had seen wrestlers with physical disabilities who found a way to compete, such as Earl Jones, a three-time Kansas high school state champion, who wrestled although he had just one leg.
Joe, Andreas’ older brother, wrestled in high school, but he was apprehensive about his brother trying out the sport. It would be tough for Andreas because he wouldn’t have as much leverage as opponents. Many wrestlers grab onto elbows, arms and wrists for their moves. How could Andreas grip without two hands and 10 fingers?
Joe feared his little brother would fail.
Andreas was out to prove that he could succeed. Instead of failing because of what he didn’t have, he succeeded because of what he did have — strong legs. Enter his signature move: the scissor hold.
The goal in wrestling is to control the opponent and turn him on his back. All Andreas had to use was his legs. Opponents knew the scissors were coming, and so did the cheering Baldwin crowd.
They would shout, “Get the scissors on him! Get the scissors on him! SQUEEEEEEZE! SQUEEEEEEZE!”
Andreas would lock his legs around his opponent’s waist, squeeze the air out of him, and if he executed it correctly, his opponent’s shoulders would drop to the mat.
“Referees would sometimes stop the match because he would make you turn blue in the face,” Kit said.
His other asset was his ability to wiggle free and escape.
“I kept myself busy doing what I knew how to do,” Andreas said. “And that was basically how to get away from your older brothers and figuring out how to not get pinned down.”
In two years of varsity wrestling at Baldwin, he was pinned only once.
Before wrestling, Andreas was reluctant to show his short arms and kept them covered with his shirtsleeves in public. In the wrestling ring, his arms were fully exposed for the crowd to see.
“If you can be comfortable with yourself in a purple singlet, then you can be comfortable wearing just about anything,” Andreas said.
* * *
People sometimes ask Andreas how he drives a manual transmission with his physical “disability.” His answer: “Can you put one foot in front of the other?”
Andreas said for most people learning to drive a five-speed, the hardest part is shifting two feet between the clutch, brake and accelerator. While he was learning to drive a manual, he killed the engine a few times, but he learned fast.
When he got his driver’s license, the state wanted to put a provision on his license requiring an annual checkup. When the state officials saw phocomelia on his application, they thought it was a disease that would get worse over time.
“Everybody is going to change over time, but my condition is not going to get worse,” Andreas said.
* * *
Applying for jobs frustrated Andreas.
“Why can’t I be Andreas Brandenberger, period?” he said. “For me, I have this asterisk next to my name — Andreas Brandenberger, physically disabled.”
As a teenager looking for work, he filled out numerous applications. Over the phone, he sounded like a qualified candidate. But then came the face-to-face interviews, and he had exactly what employers were looking for, except for a “normal” handshake.
“In reality, employers say they don’t discriminate against race, gender or physical disability,” Andreas said. “It’s all good and dandy in theory because by law you’re not supposed to, but it happens unfortunately.”
Andreas said he wouldn’t apply for a job that he knew he couldn’t perform.
Jim Lewis, president of Checkers grocery store, put aside Andreas’ “limitations” and gave him his first shot at employment at age 17. Andreas assisted shoppers to their cars with groceries and was later moved inside to stock shelves.
At the University, Andreas got his foot in the door at Kansas Athletics by working summer basketball camps. Brett Ballard, former director of basketball operations, said Andreas adapted to any situation thrown at him on the court and never missed a beat. It took the coaches just 10 minutes to understand that he was capable.
“We wanted to allow him a chance to prove himself,” Ballard said. “There was slight hesitation from us just to make sure he was comfortable with everything, but he didn’t use his physical disability as any type of an excuse.”
Currently, he is a student manager for the KU soccer team, where he makes copies, does paperwork in the offseason, makes sure practice runs smoothly and handles equipment during the season.
Andreas played on the men’s club soccer team his freshman and sophomore years. He still gets his soccer fix as the student manager, jumping in as an extra if the women’s team is short a player in practice. His love for soccer and knowledge of the sport makes setting up equipment and breaking it down after practice nothing like work.
* * *
During his sophomore year at the University, Andreas decided he would head to Snow Creek Ski Resort in Missouri and try snowboarding with his roommate, Dylan Hay, a senior from Baldwin City. In his first attempt at snowboarding, he strapped in and went down the hill.
On the second run, he fell and broke his right arm in the same area he had broken it in high school gym class. That didn’t end his interest in snowboarding. During spring break last month, he headed to the real mountains of Winter Park, Colo., to hit the slopes again. Whether it was improved balance or more caution, Andreas came away from snowboarding unscathed.
“By no means have I experienced everything there is to experience in the world, but there aren’t too many things that I come across that I don’t know what to do,” Andreas said.
* * *
Although he may have perfected his scissor hold in wrestling, he still has not figured out how to operate scissors. He can use scissors, but the lines aren’t always cut straight.
“As unfortunate as it is, they are not made for my hands,” Andreas said. “Scissors and I just don’t get along very well.”
Important utensils that Andreas has mastered are silverware. To eat, he will lay the silverware flat and balance it between his two fingers, although, if it’s a big bite, he will use two hands to hold the silverware. One obstacle for Andreas is cutting with a knife.
“If I went out on a date, I would go for finger food or pasta where I could eat it with just a fork,” Andreas said. “And for the longest time, I wouldn’t order steak because I couldn’t cut it very easily.”
Andreas’ former girlfriend Emily suggested that Andreas just ask the restaurant to cut it for him.
“I think the main problem was me over-thinking it, asking myself, ‘What are they going to think about me asking for them to cut it?’” Andreas said.
Now, he asks the chef to cut meat into smaller pieces before bringing the meal out to him.
One hurdle in Andreas’ social life is that he has yet to completely jump into the dating scene. Without full arms, he wonders if girls are comfortable dating someone with a “disability.”
“For me, I can’t just grow arms and maybe that is the one factor that limits me from dating,” Andreas said.
With his outgoing personality, he has no problem approaching and talking to women in a bar.
Amanda said she worried that a relationship was going to be hard for her brother, as it had been in the past.
“I worry that women will continue to judge him and want to just be his friend,” Amanda said.
Although he spent parts of his adolescent life hiding from it, Andreas has learned to embrace his phocomelia.
“There is no remedy or magical pill that I can take. I’m not going to wear a sign that says ‘I have phocomelia,’ but I’m not going to hide it.”
* * *
Ask Andreas about what he has accomplished in his 23 years, and he prefers to talk about the one thing he still hasn’t done — walk down the hill for graduation.
“I’ve told countless people that other than getting the quality education and meeting tons of people, walking through the Campanile and down the hill will be icing on the cake for the whole college experience,” Andreas said.
When he graduates in May, he doesn’t want to be remembered as the guy with phocomelia. Rather, he wants to be remembered as an outgoing college student with a sharp wit who enjoys soccer, snowboarding, hanging out with friends and beating them at pool by dropping the 8-ball in the corner pocket.
— Joe Preiner, a 2009 graduate and former Kansan reporter, provided both ideas and inspiration for this story.
— Edited by Lauren Keith
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Comments
Abnormal arms, but ample ability
Love the article. Nice job, Andreas.
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