If this is your first time attending Roll on Capitol Hill, why did you decide to attend and what are you hoping to achieve?

Wes Bowden, 57, C2
Nashville, Tennessee
I decided to go to Washington so I can learn more about the different legislation currently affecting the SCI community, so I can better advocate for change. To do this, I need a greater understanding of the important issues and topics that are getting addressed at the federal level. What better way to do this than through this great event? I am also looking forward to sharing time with my peers and hearing their stories of recovery and perseverance while having a chance to share mine with our government representatives. I hope to help them better understand our key challenges and daily obstacles and, in turn, help them help us through better legislation.

Joanne Pearson, 45, CIDP, Lupus, MS
Huntsville, Alabama
I am hoping to gain a better understanding of how to lobby for change in the disability community. Also to develop strong relationships with key people in order to advocate for better legislation to support important causes in my community and beyond. I also want to let my legislators know how serious HR942/S948 is to all those with disabilities. Support of this bill will bring wider access to complex rehab technology and provide a better quality of life for millions of Americans with disabilities.

Andrew Davis, Spina Bifida
Marietta, Georgia
I want to attend ROCH because I want to make sure that those of us in the disabled community have access to programs/products we need to be a part of the community in which we live! I want to make sure that Congress understands what life is really about from a wheelchair user’s point of view before they vote on an issue important to those of us in the disabled community.

Holly Marie Petro, 31, T5
Wilkes-Barre, Pennsylvania
I thought it would be a great opportunity to meet others and help make a difference in the lives of those with disabilities. Unless you personally know someone with a disability, or are that person, you are unaware of the barriers those of us with disabilities face each and every day. I want to help raise awareness, and what better way than to meet with those that help make that change.

What have you learned at previous ROCH events and what has brought you back? What are your goals for the event?

Earle C. Powdrell, 60, Brain Stem Stroke
Friendswood, Texas
In my life before the wheelchair, I never thought of myself as an activist. I would advocate for the space program but only on a professional level. I never realized the need, the satisfaction and the purpose of life that would come from attending my first ROCH and being in the training sessions of ROCH with delegates from across the United States. At home I had felt alone, at ROCH 2012, I realized with my wife that I mattered, that my issues were real, and that I could possibly be the first person Capitol Hill had ever seen using a wheelchair that can stand me up with a voice communicator that responds to my eyes. That is the power of ROCH.

Erin Gildner, 35, T11-12
Bryant, Arkansas
I made some great connections and contacts last year and have kept the conversation going on. I learn so much about what’s going in other states and on a national level by keeping up with my new friends on social media. I just hope I can soak up new ideas and skills to help improve the health and well-being of fellow Arkansans and to make new connections that can help me become a better leader in the community.

José Hernandez, 34, C5
Bronx, New York
Each time I go back to Washington, D.C., I learn that most politicians don’t really understand the issues and they are more concerned about numbers and appearances — and if you can make your issue sound great with numbers and personalize it you will get a better result.

Angie Hulsebus, 32, C5-6
Cambridge, Iowa
It’s sometimes difficult to remember that our government is made up of people — humans just like you and me. And just like we do not know what we’re not taught, we cannot expect them to know what they’re not taught. If our leaders have never been around any individuals with different abilities, they likely do not know the issues we face or the challenges in our everyday lives.

What do you think is the biggest issue facing the spinal cord injury community?

Walter Delson, 36, T4
Berkeley, California
Technology has great capacity to increase the quality of life for people living with SCI. I think that access to this rapidly growing technology is one of the biggest issues facing the spinal cord injury community. Adaptive equipment will always be expensive, and I think it is important to advocate for more funding for research and grants to provide new technologies to many people with SCI that could not otherwise afford them.

Earle C. Powdrell, 60, Brain Stem Stroke
Friendswood, Texas
Access to rehabilitation – do not cut it! My disability is an Olympic Event. You cannot train to be a professional athlete in 28 to 40 days, so how can the government expect us to stay healthy and continue to recover in such a short amount of time?

Frances Ozur Cole, 56, T12-L1
Albuquerque, New Mexico
Even though we are celebrating the 25th anniversary of the ADA, most of our home communities still do not understand the difficulties facing the world from a wheelchair. Accessibility awareness needs to be brought to the attention of our schools, churches and state and local leaders. Never again do I want to be told by anyone, “sorry, we are grandfathered and do not have to accommodate you.” It is our right to be part of our neighborhoods and cities. No one has the right to restrict us to our homes.

Alicia Regan, 38, Transverse Myelitis
Leesville, South Carolina
I think one of the greatest challenges facing the SCI community is finding the confidence and passion to “stand up” for ourselves with dignity and distinction. We either shy away because of stereotypes, or we swing too far the other way and become jerks to overcompensate. A disability is as hard emotionally as it is physically and we must BE the change we want to see. Once we have the confidence that we are not broken, we can help fix the broken things in our lives.

José Hernandez, 34, C5
Bronx, New York
A lot of individuals with disabilities want to return to work; however, they have no idea how to navigate the confusing mess that it is to be able to return to work and keep your medical benefits. That prevented me from working a long time. I recently started working and I am still confused about how the whole system works and not even sure if I’m going to be able to keep my Medicaid. Being a C5 quadriplegic I need my medical insurance to be able to work.

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Christopher Salas, 39, C5
San Antonio, Texas

I have learned not to be intimidated by politicians. They are flesh and blood just like you and I. I am going back because the fight is not over. Unless we miraculously create a Utopian society, there will always be issues that need correcting.

The biggest issue facing the spinal cord injury community is government policies that hinder those in the system who want to help themselves. People only work part time or don’t get married because the minute anyone has a dollar more than the allotted income, benefits start getting taken away. Instead of helping and giving a hand up for those trying to get out, they punish them.

I want to continue to shed light on a minority that I don’t see a single politician really get behind. The ADA did open up doors for those with disabilities, but it needs to continue to evolve with the times just as our constitution does. Disabled Americans roughly make up 19 percent of the population, according to the 2010 Census Bureau, but have no true representation. My other goals are to help support United Spinal spread the message of their agenda. I want to be one of the voices that parts the clouds of ignorance and shame and shines the light of beauty and possibility.