When Kathy Hertzog joins a conversation, you know you are hearing from a dedicated, intelligent advocate. She’s the one who will tell state officials whether their proposed policies will actually benefit individuals with disabilities. Hertzog organized a penny-filled protest at a restaurant with inaccessible restrooms, and she once helped block rush-hour traffic in Harrisburg, Pennsylvania, to demand action on disability rights. “I tell it like it is,” she said. “I’m not afraid to give the cold hard truth.”
That fearless streak has propelled decades of activism, opening spaces where people with disabilities can drive progress and build lasting connections.
Born in Reading, Pennsylvania, Hertzog grew up with more questions than answers about her condition. “They really didn’t know what was wrong with me,” she said. For years, doctors assumed it was cerebral palsy. Others suggested an incomplete C3, C4 spinal cord injury. “I say that I have cerebral palsy and/or an incomplete spinal cord injury. There’s no definitive way to know, and honestly, it wouldn’t change anything.”
By age 12, she was also living with scoliosis and wearing a molded back brace, something she continues to replace every five to seven years. Despite challenges, she thrived in school and, even though she was strongly advised to focus on computer programming, earned a degree in speech communications from Edinboro University. Instead of puzzling over coding errors, Hertzog was learning to use her voice with purpose.
Her internship at a center for independent living opened her eyes to advocacy work. In July 1990, she joined thousands of people with disabilities on the White House lawn for the signing of the Americans with Disabilities Act. “It was exciting. A friend and I sat there with 3,000 other people with disabilities,” Hertzog said. On her other side, Carl Odhner turned to her and remarked, “The battle has just begun.” At the time, Hertzog assumed equal access would quickly follow. Only later did she come to understand the weight of his words — more than 35 years on, she is still pressing for equality.
Founding of Voices for Independence
Not long after, Hertzog and a small group of peers launched Voices for Independence. This nonprofit organization empowers people with disabilities to live independently by providing advocacy, resources and local support networks. “We wanted to provide a true consumer-driven center for independent living that really met the needs of the community,” she said. The founding effort was gritty and grassroots in nature. We literally organized in my bedroom.”
She and a colleague spent two weeks hammering out IRS paperwork. “I basically retyped the entire 501(c)(3) application because the space they gave you on the form was ridiculously small. I had everybody I could think of reading it. ‘What did we miss? What should we add?’ The effort paid off. Against all odds, the nonprofit status was approved in just 14 days. “I was told it never happens that quickly,” Hertzog said.
From that improbable beginning, Voices for Independence has grown into an organization serving 27 Western Pennsylvania counties with more than 130 staff members. Today, its programs include information and referral, peer support, individual and systems advocacy, independent living skills training, and transition services. Voices for Independence also provides home modifications, nursing home transitions, attendant care, employment support and fully accessible fitness centers — resources designed to help people live independently and on their own terms.
Asked what has driven the success, Hertzog gave credit to the organization’s visionary CEO, Shona Eakin, and other dedicated individuals. “We continually seek new board members and staff who truly believe in the independent living philosophy. We make sure people have everything they need to make informed decisions. And we go that extra mile.”
Turning up the heat
Letters and phone calls are often where advocacy begins, but when those don’t work, Hertzog believes in increasing the pressure. “When you finally get to the point where nothing has worked, that’s when you need to step it up a little bit,” she said.
Hertzog and fellow activists once staged a sit-out at a pizza shop that had removed its ramp, ordering delivery from another pizza place and eating it right in front of the noncompliant restaurant. Another time, the group descended on an Erie eatery with inaccessible bathrooms. “We paid in pennies at lunchtime,” she said. Their motto: It only takes pennies to remodel your bathroom. We’ll even help you do it.
The advocate’s willingness to escalate has sometimes meant arrest. “I have been arrested twice,” Hertzog said. In Harrisburg, she joined others in blocking a busy intersection after officials ignored their demands. “The police knew we were trying to make this demonstration, so they purposely delayed our arrest. It gave the news media plenty of time to get there and cover our story.”
Not every encounter has been friendly. During another peaceful protest in Erie, Hertzog said an officer leaned over her shoulder and said, “It would be a real shame if your wheelchair tipped over.” And even though she was arrested, Hertzog, unshaken, points to the media coverage as proof that the effort made a difference.
Her forthright approach is balanced with optimism. “Treat other people the way you want to be treated,” she said. “Make your environment and your attitude so that people want to help you. Don’t be that crabby person nobody wants to be with.”
Opening new worlds in Second Life
Hertzog’s tenacity extends into the digital realm. More than a decade ago, she logged into a virtual world to reconnect with a friend and discovered Second Life, a stage for creativity, connection and ministry. This online virtual world provides opportunities for people to create avatars, explore digital spaces and build networks that mirror — and sometimes expand beyond — real life.
Hertzog is now the disc jockey at multiple venues she designed herself, including a 1950s diner, a disco roller rink, and a Woodstock-style setting. “I put the music together and serve as the DJ, take requests and run the whole show,” she said. On Sundays, she leads a nondenominational Christian worship service, The Church at Cozy Comforts, with the service carefully typed out so that those who are deaf or have learning disabilities can participate.
The reach is global. “I am literally meeting people from all over the world — Norway, Finland, New Zealand, Brazil, Australia. This experience has opened the world to me,” Hertzog said. For someone who spent years navigating inaccessible buildings and bureaucracies, Second Life offered something rare: boundless space to explore, create and connect.
Strength in persistence
At 61, Hertzog admits the fight sometimes feels harder now. “Our country is losing the battle in some ways. Things are becoming more medicalized, more scrutinized, and it’s getting more and more difficult to get the things we really need.” Yet she remains steadfast, sustained by conviction, supportive networks and an unshakable sense of purpose. With a reputation as a compelling communicator, Hertzog was recently featured on the HBO television show “Last Week Tonight with John Oliver,” speaking about the potential adverse effects of the recently passed “One Big Beautiful Bill.”
She has advice for others just learning to live with disability: keep showing up, keep pressing forward and keep asking. “If you don’t ask, you’re not going to get anything,” Hertzog said. And, with her trademark mix of resolve and confidence, she added: “Appeal, appeal, appeal and keep appealing until you get what you need.”
Hertzog’s story is a testament to what can happen when persistence is paired with respect, creativity and conviction. She has consistently turned obstacles into opportunities. She doesn’t just speak up, she creates platforms where others gain a voice as well. And while Hertzog is candid about the frustrations of bureaucracy and shifting systems, she never loses sight of what is possible. Her life demonstrates that progress is rarely convenient, but always worth pursuing. For Hertzog, independence is a collective mission, and she continues to prove, day after day, that perseverance can open doors where none seemed to exist.
Kathy may be reached at kathyzog@gmail.com
Kathy Hertzog is a disability rights advocate and community leader. She co-founded Voices for Independence (https://www.vficil.org/), a center for independent living now serving 27 counties in Western Pennsylvania. She is featured in an upcoming audio documentary by Dan Collison of Long Haul Productions. In addition to her advocacy, Hertzog is active in the virtual world of Second Life, where she connects with people around the globe.