Wheels of change: Alum champions those living with rare diseases, disabilities

LEXINGTON, Ky. (April 17, 2025) — The article below appears in the Spring 2025 edition of Kentucky Alumni magazine.

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The morning’s relentless deluge has passed, giving way to a thick, silvery mist that hangs over downtown Cincinnati. Kelly Berger, a 2011 graduate of the University of Kentucky College of Communication and Information, arrives at one of her favorite bookstores and finds a vacant parking spot near the entrance. She makes her way from her customized gray Honda Odyssey minivan, one that resembles a souped-up ’80s arcade machine on wheels, outfitted with a joystick control and a console interface.

Undeterred by the damp dreariness, she’s come to the crowded bistro next to the Joseph-Beth Booksellers to share her thoughts on a range of topics: her work, her travels and, of course, her favorite bands. There are plenty of other things she could talk about, but there’s always curiosity surrounding her wheelchair — a curiosity that makes her both the subject and the guide, inviting conversations about her condition, breaking down misconceptions and, in the process, shaping her into a highly-regarded, in-demand advocate for others in her community.

It’s lunchtime. Seating is scarce, not just because of the crowd, but due to outdated design choices. Some tables are raised by superfluous steps, overlooking the needs of patrons with mobility challenges. The eatery rumbles with a cacophony of clinking plates, scattered laughter and the echo of overlapping conversations as she’s guided to the only available table — a sprawling centerpiece fit for the entire UK Wildcats batting order. Onlookers’ eyes follow as she glides her motorized chair to the table.

She seems unfazed, accustomed to the quizzical stares that have followed her for more than two decades in the chair.

Growing up in Crestwood, Kentucky, just north of Louisville, Berger showed signs of atypical development at age 3. For years, neurologists struggled to pinpoint her condition, misdiagnosing her until adulthood, when she was finally identified as having a rare form of congenital muscular dystrophy (CMD) known as Collagen VI A1 intron 11. She leaves it simply as “Collagen VI” because, as she has written, the “letters and numbers after it make me sound like a robot.”

Berger’s condition causes muscle weakness and joint contractures. She lost the ability to walk in her early teens but says the same pressure she once placed on herself to stay ambulatory still drives her determination to keep pushing forward.

“I’m lucky that I was able to walk for as long as I could but knowing that a chair would eventually be my future — a big part of me — that’s why I pushed myself to walk so long,” Berger said. “I’d fall all the time, injuring myself when my body gave out, getting hurt along the way, and frequent the emergency room, but I wanted to do it because I knew that I wouldn’t be able to at some point, so I’m glad that I had the support from my family to employ myself in that way.”

Her rare condition often leads to respiratory struggles and joint instability, forcing her adolescence to play out among countless visits to neurologists, orthopedists, cardiologists, pulmonologists and geneticists — a relentless carousel of specialists trying to decipher her cryptic condition. While the condition can be inherited, Berger’s case was spontaneous; her older sister, Jennifer, does not have CMD.

To be seen or not to be seen

Berger lives at the intersection of being inconveniently invisible and inexplicably conspicuous. While some avoid eye contact, others nod and smile. Some gawk openly. People are often curious but hesitant to engage, even when she could use a helping hand. Berger estimates her experiences with assistance are equally split: sometimes, people go out of their way to offer kindness, while other times, she’s left to struggle until the right person finally steps in.

“Curbs are really a big issue,” Berger said, illustrating an example of the often unrecognized obstacles she routinely faces. “Cities really don’t keep up on making sure that there’s still not large gaps where my chair’s wheels get stuck. Several times, I’ve had to rely on strangers to help, lift or push. I’ll just be struggling for a while until the right person comes along.”

She observes how the pace and noise of modern life often blinds people to small but meaningful gestures, like holding a door — simple actions that take mere seconds but can make a world of difference.

“People are in such a rush, so some don’t want to stop and hold a door because they’re too busy or they’re on their way — I get that…,” Berger said, “…but it’s like it takes two seconds and, literally, it’s super helpful for me. Fortunately, there are just as many people who are willing to be kind and lend a hand.”

For Cincinnati-born Berger, these moments embody the tension of being seen and unseen. Over time, she has mastered the art of asking for help when needed while cultivating a fierce independence.

With the support of a Home- and Community-Based Services Waiver, Berger can live independently, managing her daily routines and responsibilities more easily.

“I have a certain number of hours per week that I get care for,” Berger explains. “They’re called ADLs — activities of daily living — so they help with basic tasks like getting me out of bed and showering, getting food prepped and all those things.”

She maintains autonomy while working and pursuing numerous passions — all while building a prolific online presence and reputation as a fierce advocate.

Living loud

After what she describes as a “pretty normal” high school experience, Berger graduated from South Oldham High School in 2007. At her rural school, where few other students had disabilities, she was often identified simply as “the girl in the wheelchair.” This reductive label underscored her desire to connect with a broader community of peers who shared similar experiences.

Seeking both academic rigor and the opportunity to assert her independence, Berger chose the University of Kentucky. Its strong scholastic reputation, coupled with the ideal proximity — close enough to her family for support but far enough to start becoming self-reliant — made it the perfect fit.

“I learned a lot about myself. I needed to really be independent and know that I could do it,” Berger said, noting that she was not shy about speaking up for accommodations necessary to blossom on campus. She gives credit to UK’s Disability Resource Center for helping her be forthright about her needs.

“They were great at advocating and making sure that I got what I needed,” Berger said. “They made it happen.”

The recipient of numerous coveted awards including the Lt. Col. Charles Richardson DeSpain Journalism Scholarship and the Carol Sutton Scholarship, she studied journalism and multimedia, parlaying her love of music and writing into a grueling career promoting nonmainstream bands and eardrum-shattering performances.

“I started out writing for some of the local outlets in Cincy by doing show previews and Q&As with the bands before they would come to town — you know, as a precursor to the shows,” Berger said. “I did that for a while, not really making any money, but you’ve got to start somewhere, right?”

More than a decade later, Berger still reflects on the insightfulness of one of her favorite instructors at UK, Associate Professor Kakie Urch, whose advice profoundly shaped her approach to her professional life.

“I really vibed and bonded with her. She was a fan and had a background in music and she sort of took me under her wing,” Berger said. “She made me see things differently — how to use my adversity to my advantage. It just kind of opened my world and gave me confidence to see things differently.”

An expert in multimedia studies who has toured with numerous hip-hop and rock acts, including Sting, Urch remembers Berger as a “curious, responsible college student who came into class confident to do her work and succeed, who just happened to be using a wheelchair.”

“She’s smart and has a wicked sense of humor,” Urch added. She urged Berger to write about what she knows.

Since Berger was already attending concerts at various arenas and concert halls, Urch suggested creating a website reviewing performance venues.

“I mean, who’s better to say what’s a good arena experience than somebody who’s gone to arenas, is a music fan and uses a wheelchair, you know?” Urch said.

Her writing career expanded into social media and marketing, sometimes working from home and other times on the frontlines of concerts, close to crowd surfing and sweaty mosh pits.

“I wanted to immerse myself in the experience,” Berger said, laughing.

While recognizing that some events and venues can pose challenges for someone in a wheelchair, Berger boldly declared that the punk rock alternative scene — the genre of her favorite band, blink-182 — is one of the most inclusive, fostering a strong sense of community and frequently offering accommodations that meet her unique needs.

“I’ve always felt that they really embrace people that are different,” said the avowed audiophile. “It doesn’t matter — ability, gender, color or beliefs. I feel they’re more accepting to everyone, perhaps more than in any other type of music.”

Berger was initially content living her rock-and-roll lifestyle, writing about indie bands and attending festivals like the Vans Warped Tour. But as time passed, her frustration with outdated policies and systemic barriers grew. Determined to turn that frustration into action, her focus turned toward advocacy, working to create meaningful policy changes. For her and the rare disease community, this was where the rubber quite literally met the road.

Start spreadin’ the news

Since learning to drive at age 21, Berger has logged countless miles visiting more than 40 states (so far). In her van, she recently navigated the frenetic streets of New York City, where honking horns, flashing lights and hurried crowds set the stage for a photo shoot with photographer Maddie Graves. Graves captured images of Berger and fellow wheelchair user Avery Roberts as they explored the Big Apple’s iconic landmarks while also highlighting the significant challenges of navigating the city in a powerchair.

“People are still so shocked to see people in wheelchairs existing in public, even in one of the biggest cities in the world,” Berger said. She describes herself as “exhausted” by the countless ways people in wheelchairs are routinely excluded from life’s joys.

At first, that paradoxical visibility felt more like a burden than a platform. But gradually, the questions, stares (or aversions) and constant reminders of inaccessibility fueled her advocacy. Harnessing the power of her voice, she now uses her story to challenge barriers and amplify her message.

“I never saw myself involved in public speaking,” Berger said with a chuckle. “It’s terrifying to me. I don’t enjoy it. I don’t love it, but seeing that my voice can really make a difference and hearing my story can help others and affect change — that motivates me to be like, ‘OK, what’s next?’”

In recent years, she has engaged policymakers in Ohio and Washington, D.C., offering her front-row perspectives on disability issues. As a result, she’s emerged as a formidable voice at events pushing for meaningful change — advocating for accessible infrastructure, equitable health care and stronger support systems for people with disabilities.

Berger is focused on advancing the SSI (Supplemental Security Income) Savings Penalty Elimination Act — introduced by former U.S. Senator Sherrod Brown, D-Ohio — and eliminating the financial penalties that unfairly impact disabled individuals or couples when they marry. These reforms aim to overhaul outdated SSI provisions that have become obstacles to economic stability for many people with disabilities.

In December, Berger’s national impact was recognized in Washington, D.C., where she received the 2024 Rare Voice Award for Federal Advocacy Patient Advocate from the EveryLife Foundation for Rare Diseases.

“Kelly’s the kind of community activist that helps power the mission of EveryLife,” said Michael Pearlmutter, EveryLife Foundation’s Chief Executive Officer. “She’s a leader in both the rare disease and disability communities, using her voice and sharing her story to affect change. Our community’s lucky to have her on our team.”

While accepting the honor, Berger acknowledged that much work remains, both locally and nationally, but expressed hope as she sees the gradual changes benefiting people like herself.

“Being part of that change is so rewarding,” she said. “We’re starting to see positive glimmers of hope for the rare disease community. It’s a little light of encouragement that our voices are truly being heard.”

In addition to her advocacy work, Berger has found a calling that allows her to profoundly impact others, opening metaphorical doors to new opportunities for those in need.

She works as a community engagement manager for Cure CMD, a nonprofit organization dedicated to advancing research and treatments for CMD while empowering those living with it. Berger calls the job “a literal honor and dream position.”

“I’m on the community side, so I do a lot with the young adult program,” Berger said. “I like to help mentor the teens and 20s. I really have an interest in helping during those transitional times of high school and college, driving and career.”

Between endless doctor visits, stacks of insurance forms and the unrelenting bureaucratic red tape required to prove eligibility for benefits, Berger said managing a disability is a full-time job. She views her role at Cure CMD as essential for guiding younger individuals through these challenges.

“I struggled through that, and I’d love to make it easier for others,” Berger said. “There are programs out there to help support independence, but it’s finding — and qualifying for — them and then doing all the paperwork to prove that you’re disabled. It’s crazy that you have to do that, but there are so many fraudulent people who abuse and take advantage of the system out there that when you actually have a qualifying condition, you have to fight to prove you have it and whether you’re disabled enough to qualify to get those hours. To get that level of care, you have to be a strong advocate for yourself.”

Welcome aboard?

Another area Berger is especially eager to influence change in — the one she is most passionate about — is the travel industry, particularly air travel.

The cattle-like herding, claustrophobia-inducing lack of personal space and petty annoyances endured by most air travelers pale to the indignities and perilous obstacles faced by those with severe mobility challenges. This is where Berger comes in. She has been actively championing to help members of her community preserve their autonomy and self-respect as much as possible while traveling.

The U.S. Department of Transportation estimates that nearly 19 million Americans with disabilities fly each year, and more than 11,000 wheelchairs and scooters are damaged in that same time. For those who depend on these conveyances, the already anxiety-inducing act of flying is compounded by the acute fear of public humiliation, loss of mobility or even death.

“The hope is that we don’t have to worry about our chairs being damaged nor the dehumanizing experience of trying to get into a tiny aisle chair and have the airline help awkwardly assist transferring you into a plane seat with everyone watching you,” Berger said. “It’s not a pleasant experience at all.”

To underscore her point, Berger highlights the airline industry’s widespread lack of proper employee training, which has led to tragic outcomes for wheelchair users. For example, a United Airlines passenger suffered permanent brain damage after his powerchair was mishandled during deplaning, resulting in a $30 million settlement. In another case, disability advocate Engracia Figueroa developed pressure ulcers after United damaged her custom wheelchair, leading to a prolonged battle for repairs and, ultimately, health complications that contributed to her death.

Incidents like Figueroa’s weigh heavily on Berger’s mind when traveling. Protecting her wheelchair — her primary connection to the world — is a key reason she avoids flying altogether.

“It’s an archaic kind of experience,” Berger said. “I flew two years ago. Luckily, my chair was OK, it didn’t get damaged, but they had to hold up the flight because they couldn’t figure out how to get my chair to fit under the cabin. I had to insist that they not disassemble it. I’m sitting there, just getting terrible looks from people. It’s not my fault. It shouldn’t be this way.”

Last year, Berger was in Washington as then President Joe Biden signed a measure that created new requirements for airline workers assisting wheelchair users, accessibility upgrades at airports and enforcement of rules protecting the rights of airline passengers with disabilities.

Among the provisions in the legislation is developing a streamlined process for correcting damage caused to a wheelchair by an airline. Berger said the time necessary to repair many of these customized chairs can be lengthy, infringing upon the owner’s ability to get around.

“People are like, ‘Just get a new wheelchair,’ but insurance companies can’t do that fast turnaround,” Berger said. “It can also take several months to get parts in. You’re immobile, and a lot of people don’t understand how serious an issue that is.”

Instead of flying, she drove her minivan eight hours from her Cincinnati home to the nation’s capital.

“I refuse to fly now,” Berger said.

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Spurred on by positive experiences with helpful strangers and negative experiences with air travel, Berger was effusive about her hopes for the future, particularly how she and others in similar situations are perceived. Most people only know about muscular dystrophy through the old Jerry Lewis MDA telethons — those Labor Day weekend fever dreams of glamour and camp where A-listers such as Diana Ross and Frank Sinatra performed alongside eclectic acts like Charo, Carrot Top and a death-defying troupe of acrobatic poodles.

In hindsight, the telethons, though well-intentioned, unwittingly reinforced what Berger calls “inspiration porn.” Still, she applauds their efforts to raise awareness and critical funds and put faces to the illness. In the age of social media, she hopes future generations view those with CMD and other rare diseases not as objects of pity but as individuals with full, multifaceted lives.

“I’d like people to be more embracive to people that are different,” Berger said, her words devoid of bitterness or self-pity. “I’d love for the newer generation to want to get to know us and not be afraid to hear our stories and want to engage. I’m hopeful for the next generation. I feel like people may be more open-minded or more prone to accept us, not seeing us as different but as equals.”

Finishing at the cafe, Berger returns to her van and drives off into the late afternoon’s ethereal haze. She could be going to a concert at Bogarts, her favorite music venue in the city; maybe she is heading home to post more content to her blog. Whatever her plans, with her tight-knit community’s support, she’ll be doing them as a strong, confident woman who just happens to be in a wheelchair, independent but not alone.