Joe Brown pressed a button, and slowly, his remote-control wheelchair began to raise his six-foot-four-inch frame to a standing position. As the motor whirred, a crowd of 1,000-plus was silent.
Brown loved his chair, and he especially enjoyed that feature. Living with Friedreich’s Ataxia, a rare and debilitating disease that progressively damages the nervous system, he wasn’t able to extend all of his lanky frame. That is, until he got the chair. Now, he could even see eye-to-eye with his father, Larry.
This process took about 60 seconds, but this was no ordinary minute. What he once dismissed as an impossible dream had come true. The public address system in the Dean E. Smith Center had just blared Brown’s full name. He was on the right side of the stage, preparing to graduate from UNC Chapel Hill’s prestigious Kenan-Flagler Business School.
When Brown decided that he was upright enough, he used a joystick to move himself across the stage. That’s when he realized that the whole crowd was now standing with him.
Brown — a 2016 UNC-Chapel Hill graduate, rabid Tar Heels and Carolina Panthers fan and aspiring sports businessman — passed away last month at the age of 28. For the many who knew him, his friendship left an indelible mark.
Classmates, such as Paige Neuenfeldt, say his personality was magnetic.
“He just had that friendly and inviting personality that made you want to go up and say hello,” Neuenfeldt said. “He’s not asking you how your day was just to ask you. He actually cared.”
He was also an advocate for members of Carolina’s disabled community; often meeting with university administrators to discuss how to make the campus more accessible, and fundraising at awareness events with the likes of Panthers linebacker Thomas Davis.
In talking to friends about Brown’s life, it’s easy to see him as a heroic figure, who had never been rattled by his hardships. But that’s not his story.
A debilitating diagnosis
Growing up in Mooresville, Brown joined the Boy Scouts, enjoyed fishing, hunting and cheering for his teams.
It wasn’t until elementary school that his mother, Mary Brown, started to sense something was wrong.
“There was a certain step he had, but we didn’t really think anything about it,” Mary Brown said. “But then, the older he got … the more his feet would go out sideways.”
In May 2001, per a doctor’s recommendations, Brown’s parents took him in to get evaluated. After conducting blood tests, the physician diagnosed him with a degenerative, multi-system disease called Friedreich’s Ataxia. The disease, which is inherited, begins with that uneven gait and leads to progressive nervous system damage.
“Unfortunately, people with Friedreich’s and their families are constantly mourning the loss of an ability that they had previously,” said Felicia DeRosa, fundraising and communications director at the Friedreich’s Ataxia Research Alliance.
DeRosa said the disease can also lead to cardiovascular problems, such as cardiomyopathy, which makes it difficult for the heart to deliver blood to the rest of the body.
The diagnosis devastated Brown. By middle school, just walking from class-to-class had become arduous, and he would have to hold onto the wall to keep his balance. Eventually, at the urging of his friends and family, Brown gave in and started to use a wheelchair.
He still finished high school — and earned the rank of Eagle Scout, the highest attainable in the Boy Scouts — but his mother had been forced to drop everything and become his full-time caretaker. She helped him with everything from eating to changing clothes.
His physical deterioration had taken its toll on the young man’s psyche. He didn’t know if he wanted to go to college, or if an employer would even want him.
Picking himself back up
In 2009, Brown started working out at Race To Walk, a non-profit fitness center for people with spinal cord injuries and other neurological disorders, in Mooresville. At the gym, he met people who, despite also being physically impaired, attended colleges and worked jobs.
He started exercising there almost every weekday. His mother began to notice a change in his demeanor.
“Seeing people there, with all the different injuries that they had, he thought, ‘You know what? I can do this,” Mary Brown said.
He began attending Mitchell Community College in Statesville, N.C. After excelling there for two years, Brown, a first-generation college student, applied as a transfer student to multiple in-state schools. He toured his number-one choice and his future business school in 2013, and made a lasting impression on Anna Millar, director of the Undergraduate Business Program at Kenan-Flagler.
“I was blown away,” Millar said. “My first impression was that this guy is on it; he wants this; and he struck me as the kind of guy who, if he put his mind to something, he’d accomplish it.”
Brown was accepted to all of the schools where he applied, with scholarships.
“And, of course, UNC Chapel Hill was his pick,” Mary Brown said.
‘He was just kind of tenacious’
Brown enrolled at Carolina in the fall of 2014. Due to his impairment, he relied on computer dictation features to transcribe his already-somewhat slurred speech when writing papers. When correcting mistakes, he could only press one key at a time — the slow-moving process frustrated him and resulted in frequent all-nighters.
“He was just kind of tenacious,” classmate Nathan Staub said. “Like I’m going to do this, and it may take me twice as long to get out the same amount of words as someone else, but screw it, I’m gonna do it.”
Brown also strived to make Carolina more accessible for future students with disabilities.
His mother said she and her son noticed problems for people with disabilities all around campus, and reported them to the university’s administration. Over time, top administrators began to ask Brown for suggestions to make Carolina more user-friendly.
His work ethic opened doors. During his senior year, Brown was accepted to a one-week study abroad business school trip to Dubai. The trip required extensive planning. Mary Brown didn’t accompany her son on the trip — one of their first weeks apart in 26 years.
Staub, a football player, went on the trip, too, and they became fast friends.
One day, the group was scheduled to go dune bashing, a type of off-road driving done over sand dunes. They informed Brown that he couldn’t bring his mechanical wheelchair into the desert.
Brown responded as only he might.
“Strap me to the roof and put sand goggles on me if you have to!” he said.
Brown was equally determined when it came time later that spring to take part in the Carolina tradition of graduating seniors climbing the university’s 172-foot Morehead-Patterson Bell Tower to sign their names on the top-level brick walls.
It was Staub who carried Brown in his arms, to the top.
“In his mind, it wasn’t an option to not do that,” Staub said. “It’s hard to sum up a person in quotes, but everyone that interacted with him came away feeling happy and energized. When you see someone with such positivity; with obvious struggles but not focusing on those, focusing on what he accomplished and what he loved, it gave you time to reflect and pause on all of the blessings that you have.”
Raising him up
Brown’s empathy led his classmates to pay it back, too, when the time came.
In April 2015, Brown was hit by a bus. He sustained minor injuries, but his wheelchair was badly damaged. Although insurance covered the costs of replacing his old chair, due to insurance regulations, he wouldn’t be able to upgrade for another five years. His mother said her son had wanted a power wheelchair with a standing feature for some time.
When his business school classmates learned what happened, they launched a GoFundMe campaign and raised $8,269 — the amount needed to finance a Permobil F5 VS, the wheelchair that Brown wanted.
He put it to good use. Standing alongside his friend, Taylor Sharp, Brown watched the Tar Heels home basketball game against Duke from the first row of the risers — the most coveted spot in Carolina’s student section, right behind the Heels’ second-half basket. It’s every UNC student and basketball fan’s dream, and Brown found a way to make it happen.
“It’s a pretty good depiction of his whole life,” Sharp said. “He always found a way to have the experiences that everyone else had, and it took a special person to be able to do that.”
An inspirational life
And just like that, he was gone.
Brown died suddenly on September 6. He had been admitted to Huntersville Medical Center the day before with an infection. Just a day later, his body succumbed to refractory shock and respiratory failure.
He was buried four days later at his family’s church, Landis Baptist.
The 11 a.m. service packed the church. A Carolina blanket lay draped over Brown’s closed casket. His college graduation gown swayed just a few feet to the right.
The purpose of college is academics, and preparing for life in the real world. It’s also about self-discovery, and forging relationships that shape one’s perspective and identity for life.
During his short two-year stint at UNC-Chapel Hill, Brown’s personality and determination to not let his physical limitations constrain him shifted the perspectives of so many classmates and fellow Carolina sports fans.
Sharp said the memory of Brown’s friendship will stay with him for the rest of his life.
“I’m definitely still processing it, I suppose,” Sharp said. “But in all of that, there’s no doubt to me that this is a great loss for everyone, because he was such a bright light in the world. But that light doesn’t go out, just because he’s gone. If anything, it’s just going to keep shining, and that’s a special feeling that I’ve had throughout this.”