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Disability Activists Roll on Capitol Hill. Left to Right: Stephanie Woodward, NY; Alex Wegman, NY; & Scott Porter, FL
The theme for the event: ‘Do Nothing About Us, Without Us’, captured the ongoing desire of people with disabilities to play a key role in shaping policies that affect their lives.
“We Roll on Capitol Hill because it’s our right, as Americans, to be heard,” said Paul J. Tobin, United Spinal’s president and CEO, who is a navy veteran and power wheelchair user.
“The concerns, beliefs, and most importantly the voice of the disability community belongs in the dialogue when policies are created that affect us. It is time to be involved in the conversation, and this gathering is an important step toward achieving this objective,” he added.
Armed with their personal stories of living with spinal cord injuries and disorders (SCI/D), United Spinal’s members and chapter leaders met face-to-face with their representatives to offer real solutions and alternatives, and explain the real-life implications of arbitrary cost-cutting proposals that threaten:
• Civil rights protection for people with disabilities
• Medicaid-supported home care services.
• Rehabilitation and appropriate wheelchairs.
• Medical equipment, such as catheters.
• Adequate coverage of prescription drugs.
“Our personal stories have the power to influence elected officials far better than any lobbyist. They are the strongest tool we possess as disability advocates. They break down barriers. They allow people to see beyond our wheelchairs for who we really are. Our stories put a face to our issues––removing them from stacks of mundane legislative papers to the real life challenges we face daily,” Tobin said when speaking to attendees.
Roll on Capitol Hill began with a legislative policy conference on June 25, providing activists in attendance insight from guest speakers on disability-related policies that need improvement––as well as the opportunity to share their ideas on how to effectively advocate on behalf of the United Spinal 37,000 members and nearly one million Americans living with SCI/D.
June 26 was devoted to Congressional visits and concluded with an awards reception in the Cannon Caucus Room, 345 House Cannon Building.
“Being here in the Capitol, lobbying with so many impressive people for a cause so near and dear to my heart has been unbelievably empowering. I’m excited about the future,” said United Spinal member Nick LiBassi (NY).
“(Legislators) want to hear from me. They want to hear from the constituents. That’s what I got in every meeting. They just really listened more intently than they did when I’ve taken part in other lobbying events,” commented Jen Wolff, also a United Spinal member (IA).
United Spinal awarded Congressman and wheelchair user James Langevin (D-2nd RI) with the Junius Kellogg Outstanding Congressional Leadership Award for demonstrating courage, energy and dedication in promoting productive, independent lives for people with disabilities.
“By coming to Washington to share your stories and experiences, you enlighten and educate us as lawmakers and put a very important face on issues that affects millions,” said Langevin as he accepted the award from Tobin and Association members from Rhode Island.
VetsFirst, a program of United Spinal, honored U.S. Representative John R. Carter( R-31st TX) with the VetsFirst Congressional Bronze Star Award in honor of his pursuit of legislation to ensure that veterans with disabilities who use service dogs have access to veterans affairs facilities.
Senator Tom Harkin (D-IA) received the James J. Peter’s Disability Champion Award, named in honor of James J. Peters, who led United Spinal Association for 31 years and after whom the Bronx VA hospital is named.
As a recent person with a spinal cord injury, I want to thank those who took the time to speak on our behalf. The one thing I have learned to hate is someone who doesn’t know what I feel or what I need telling me what I need or feel. Thank you! So much needs to change for us, but make us a part! Those who representated us did just that! Thanks again!
I think that it’s very unfair for people with disabilities to have such limited access to transportation. Most people can just hop in a car or other vehicle and go but those of us with a disability are unable to do so. For myself I am limited to paying thirty dollars for a book of five vouchers through the Chesterfield Access program. If I need to go somewhere other than where I can get to in my chair I have to use the vouchers and it takes two vouchers per trip and extra vouchers if my daughter is riding with since she is only fourteen she can’t be considered my aide. Since the vouchers cost so much and I can’t get to the library to get them my parents do it for me. While I am extremely greatful I feel like it’s unfair for them to have to do this for me although they don’t mind. Why does disability transportation have to be either expensive or compilcated and sometimes non existant. I’m a paraplegic and I enjoy getting out and about just as much as anyone else but I am severely limited on where I can go. If I want to go to the library I have to give Van Go twenty-four hours notice and they stop taking reservations at three in the afternoon which I was not notified of the change till I went to schedule a trip. I have to use these vouchers to visit my parents where they live otherwise I usually am unable to see them or my sone who lives with them. I’m very family oriented and want to do things with my daughter but have almost no transportation around here in Colonial Heights. There is a but the comes around and will take people places in the general area of Colonial Heights, Hopewell and Petersburg but that is only for seniors. My question is what about those of us in chairs? Why are we excluded from transportation accessability? How do we make a change? Who do I start with? I want to make a change for the better here where I live because I know how it is and there are others in town here in the same boat I am. While I may have a van it’s got too many problems for me to have the money to fix it. I am unable to drive it too. It’s a large conversion van and the lift won’t support the weight of my power chair which is what I prefer to use. I just want those of use who are disabled to have the same access to transportation that isn’t medically related as those who aren’t disabled.