Meet the Attendees of the 2016 Roll on Capitol Hill


At the heart of all advocacy efforts are the advocates themselves — the people who find the time to tell their stories and make their needs and voices heard. Since United Spinal’s first Roll on Capitol Hill five years ago, hundreds of passionate wheelchair users and members of the SCI/D community have trekked to Washington, D.C., to make sure that their representatives understand the needs of our community. This June 26-29, attendees will storm Capitol Hill to carry on the fight for a wide range of issues, including: access to complex rehab technology, the Disability Integration Act, Medicare and Medicaid reforms, SCI research, accessible transportation and much more. With more than 150 attendees registered so far, this year’s group is already the largest in the event’s five-year history, and the most geographically diverse, with rollers hailing from 32 states, Washington, D.C., and Puerto Rico. Before they tell their stories to America’s policy makers, we thought we’d have them tell you why they are excited about rolling on our nation’s capital.

Gary-Karp-ROCH
Gary Karp

Gary Karp
Tempe, Arizona
United Spinal Board Member
First Time at ROCH

A professional juggler, an architect, and an SCI hall of famer — those are just some of the roles Gary Karp has filled in his illustrious career. But topping his extensive resume is his 20-plus years as a notable author, motivational speaker and civil rights pioneer for the modern wheelchair user and disability community. A T12 paraplegic for over 40 years, Karp has traversed the country speaking at more than 70 colleges and universities, rehab centers and conferences, encouraging those with disabilities to realize their full potential and urging the nondisabled community to look beyond the wheelchair. He joined the United Spinal board earlier this year, and now he is setting his sights on Congress as a first-time attendee of the Roll on Capitol Hill.

“I’m looking forward to trying to shift the perspective of legislators to understand disability as a natural human experience that is much less about loss and limitation and much more about adaptation and possibility,” Karp says. “We need the broader society to recognize that the capacity of people with disabilities of all kinds is being unleashed by a radical, historic transformation. We’re getting stuff out of people’s way, steps, lack of restrooms, limits in transportation and housing, doubts of employers that we can contribute on par with others. People have an innate right to pursue their optimal independence. It’s actually no different from the democratic right to the pursuit of happiness.”

Karp was injured falling from a tree in 1973 and found himself facing an inhospitable environment. Then 18, he had to be physically carried in and out of his architectural classes because the building was completely inaccessible. Incensed by the lack of accommodations for wheelchair users, Karp became his own advocate and launched a successful campaign to make the building and campus more wheelchair friendly. This was the beginning of Karp’s fervent quest for widespread accessibility on behalf of the disabled population.

A debilitating hand injury cut Karp’s architecture career short, and he went from designing plans for homes and buildings to pursuing his passion of helping others with spinal cord injuries design and rebuild a plan for their lives. He was inducted into the SCI Hall of Fame in November 2007 for his numerous contributions to the SCI community.

Karp is looking forward to ROCH and addressing congressional leaders about the importance and need for innovative and reliable equipment to allow wheelchair users to achieve their full potential. “Since 1973, I’ve obviously been the beneficiary of an amazing level of advancement in wheelchair design,” Karp explains. “So I know how much of a difference the right chair makes in a person’s life. In fact, being denied the optimal chair costs people their potential — and so costs the rest of us their contributions. Even worse, someone in the wrong chair is prone to chronic health issues like skin breakdown, arm, shoulder, and back damage, if not undue fatigue and energy loss, compromising their quality of life.”

He says that state-of-the-art mobility equipment is invaluable and essential to creating a society where those with disabilities can contribute their talents. “They will be healthier and put less demand on the health care system, and they will work instead of being trapped in the entitlement system where they don’t want to be and don’t belong,” says Karp. “They will contribute more to their families, their communities, and in the workplace where they can bring their skills and creativity and productivity to bear. Family members will be freed of the demands of unnecessary caregiving and the financial burdens on the family.”

********************************

Alicia-Reagan-ROCH
Hand on her chin, Alicia Reagan listens intently.

Alicia Reagan
Leesville, South Carolina
Blogger, Mom
Second Time at ROCH

Alicia Reagan attended the 2015 Roll on Capitol Hill and can’t wait to get back to D.C. this summer. “After spending the day on the Hill, pouring your heart and soul into every conversation, you came back exhausted but it felt so wonderful,” she says. “You knew that your day had purpose and meaning and it was because of your story. That is a really good feeling.”

Reagan has lived with transverse myelitis since 2009. She says the birth of her son — her sixth child — four months after she became paralyzed, helped to renew her faith that her new reality was not a death sentence. “My life as a wife and momma to a bunch of kids changed drastically. But, one thing is the same. I am still happily married and now a mom to six wonderful children. Every day of life that is given to me is such a precious gift,” Reagan says.

Seven years later, Reagan has channeled her glass-half-full mentality into a successful blog called “This Enabled Life,” where she advocates on behalf of the disabled community and writes about her family, her faith, and the ups and downs of life in a wheelchair. “It has changed my life in many horrible and wonderful ways. I love to talk about it all. The good, the bad, and the ugly.”

This will be Reagan’s second year attending the Roll on Capitol Hill. She says the event is a way to actively make a difference and allows the disability community to express their needs, wants and concerns to government officials. “I am a passionate believer that we have no right to complain about any of our hardships unless we are willing to personally be a part of doing something about it. This is just one other way I can use my voice to help make changes for now and for the future,” she says.

“More people are realizing that if we do not get personally involved, changes will not happen. It is pretty addicting to go and be a part of something so important and fuel off of one another. Once it gets in your blood, you talk about it and then more want to be involved with you. I believe that is why it has grown and why it will continue to grow.”

In addition to advocating for things such as increased wheelchair accessibility, affordable adaptive equipment, health care, and jobs, Reagan says the event allows her to connect with others, learn about their lives and take a stand together.

“I love learning what others in the disability community are accomplishing in their advocacy efforts. I look forward to reuniting with friends, meeting with our legislators, and coming home prepared to tackle local issues,” she says. “It is so fun to meet others, hear their stories, watch them gain confidence in speaking up for themselves, and develop friendships that last all year long.”

“There were three other ladies that I was friends with on Facebook but we had never met in person,” explains Reagan. One of the nights we did a girl’s night and thoroughly enjoyed sharing stories, tips and ideas of our lives as women with disabilities. It was a cherished memory we all went away with.”

********************************

Namel-Norris-ROCH
Namel Norris

Namel Norris
New York, New York
Hip Hop Artist
First Time at ROCH

Namel Norris, known by his stage name, “Tap Waterz,” is part of a successful hip-hop group called “4 Wheel City.” The group has gained global recognition and is committed to showcasing the talents and potential of those with disabilities. Having already made a mark on the music scene, Norris is looking forward to doing the same on Capitol Hill.

“I’m attending ROCH because I feel like I have a purpose and reason to be there, to represent the people who feel the way I do about disability issues,” he explains.  “I’ve had several trips to Washington, D.C., within the past months, which included a meeting in the White House, a performance on Capitol Hill and at the AAPD Awards Gala. Attending ROCH will be an extension of those experiences and give me the opportunity to further the groundwork laid down over the past months.”

Norris sustained a T2 spinal cord injury from accidental gun violence in 1999. A teenager at the time, he initially struggled with his new limitations, but soon developed a positive attitude and went on to go to college and earn a degree in business management.

Namel-Norris-White-House
No stranger to advocacy, Namel Norris attended a meeting at the White House this past December to talk about disability and poverty.

Through 4 Wheel City he has found a powerful voice. “Our mission is to inspire others with our music and story to never give up, to show the world that people with disabilities still have talent and deserve to be treated equally,” Norris says.

Norris is excited to talk with congressional leaders about issues dealing with disability rights and gun violence, to name a few. “I am hoping to meet with my representatives and begin to build relationships with them that will lead to the changes I want to see in this country,” he explains. “I’m looking forward to bringing more awareness to disability rights, gun violence, poverty issues, police brutality, and making new relationships with elected officials and other attendees.”

An avid social media user, Norris is also looking forward to forging bonds and friendships with fellow ROCH attendees. “The social aspect is the icing on the cake of the ROCH,” he says. “Mainly because it provides an opportunity to expand and share ideas even further, especially in these times of social media. I think it adds layers of potential for change outside of just the meetings themselves.”

Norris feels fortunate to have the opportunity to take part in ROCH and hopes his voice can make a difference, even in a small way. “The fact that a person like myself from the streets of the Bronx will be attending to speak on behalf of my movement is a testament to why its longevity is important,” he explains. “It gives those who would never have a chance to do such a thing a chance to make a difference.”

********************************

Daniela-ROCH
Daniela Castagnino with her boyfriend, Matt.

Daniela Castagnino
Washington, D.C.
United Spinal Resource Center employee
Fifth time at ROCH

She might be a United Spinal Association staff member, but Daniela Castagnino is attending the Roll on Capitol Hill for much more personal reasons. “As a disabled person myself, I have a vested interest in presenting our issues before Congress,” Castagnino explains. “The laws and statutes that Congress passes affect people on a daily basis, and our politicians need to understand that.”

Castagnino sustained a C4-5 level spinal cord injury from a car accident six months after she graduated from the University of Virginia. She soon realized she wanted to make a difference for the disabled population, moved to Washington in 2001 and ended up working for what has since become the United Spinal Resource Center.

As a staffer, Castagnino brings the unique perspective of having attended ROCH in previous years, and playing an integral part in the planning process year-round. She has enjoyed watching the event grow and improve. “We are better organized and have better representation from more states around the country,” she says.

Castagnino says ROCH has made major progress on a government level and has helped create positive momentum for the active wheelchair user. “It’s always heartening when you’re able to get endorsements or acknowledgments of support from a new congressperson,” she says. “These are the people we need to get on board with our issues if we want to instill change and improvements in the quality of life of our members.”

Working for United Spinal Association has allowed her to become invested in the many issues facing wheelchair users and develop close bonds with members. Along with striving to make a difference, the camaraderie is her favorite part of the event. She talks with members from across the country all year in her job and relishes putting faces to names and voices.

“I love meeting new people every year from all corners of our nation and reconnecting with those who have attended in the past,” Castagnino says. “Spending time with ‘real people’ every year tends to revitalize us and re-energize us for years to come.”

Save


Support New Mobility

Wait! Before you wander off to other parts of the internet, please consider supporting New Mobility. For more than three decades, New Mobility has published groundbreaking content for active wheelchair users. We share practical advice from wheelchair users across the country, review life-changing technology and demand equity in healthcare, travel and all facets of life. But none of this is cheap, easy or profitable. Your support helps us give wheelchair users the resources to build a fulfilling life.

donate today

Comments are closed.