11 minute read
Wheels of Change
Kelly Berger stands up for those with disabilities while navigating life in a powerchair. From fighting for accessible air travel to mentoring young adults, her work empowers others and pushes for systemic change in policy and perception.
By Dan Knapp
The morning’s relentless deluge has passed, giving way to a thick, silvery mist that hangs over downtown Cincinnati.
Kelly Berger ‘11 CI arrives at one of her favorite bookstores and finds a vacant parking spot near the entrance. She makes her way from her customized Honda 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 Seating is scarce, not just because of the crowd, but due to outdated design choices.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 reveals. “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 cites as 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 thrumb 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 says, “…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.
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.
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Since learning to drive at age 21, Berger has logged countless miles visiting more than 40 states (so far). Her van recently transported her through 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,” recalls Berger. 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 chuckles. “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 healthcare 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,” 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,” explains Berger. “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 confides. “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 present in Washington D.C. as thenPresident 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 flyers with disabilities.
Among the provisions in the legislation is developing a streamlined process for correcting damage caused to a wheelchair by an airline. Berger explains that 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 says. “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 gray ‘23 Odyssey eight hours from her Cincinnati home to the nation’s Capital.
“I refuse to fly now,” Berger states, adamant.
The café is now empty, except for a couple of diners sitting in a corner booth holding hands and ignoring their tuna melts.
Before she leaves, Berger talks 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 troop 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 confesses, 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.” 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. ■
