News from NSCIA: August 2014

Roll on Capitol Hill: Success!

Tennessee members Teal Sherer and Robbin Sinatra greet U.S. Sen. Bob Corker (R-Tenn.).

Tennessee members Teal Sherer and Robbin Sinatra greet U.S. Sen. Bob Corker (R-Tenn.).

The 3rd Annual Roll on Capitol Hill was an unabashed success. From June 22-25, United Spinal Association and advocates from its membership division, National Spinal Cord Injury Association, made their presence felt in Washington, D.C. New and old faces injected enthusiasm and wisdom and created a palpable sense of excitement as attendees from 26 states, Puerto Rico and D.C. stormed the Hill for over 200 meetings with their congressional representatives to educate them about how Congress can improve the lives of the millions of Americans living with disabilities. To give you a feel for what it was like, here are a few anecdotes from some of this year’s attendees.


Empowered and Excited

Reveca Torres, Illinois
My nervousness started as I began to pack and had to decide what to wear — what does one wear to speak to all those important people that make decisions in our country? I consider myself smart and articulate on many matters, but the truth is what I was about to do was new to me. That said, I’ve been disabled 19 years and I’ve become quite good at being that lady that writes letters when she’s been wronged or sees injustices. I don’t keep quiet and sit pretty. I am not aggressive, but I am firm and persistent.

Steve Burns, Aileen Rangel, Reveca Torres and Pat Maher (clockwise from top left) made a great team representing the state of Illinois.

Steve Burns, Aileen Rangel, Reveca Torres and Pat Maher (clockwise from top left) made a great team representing the state of Illinois.

To be honest, I am not very knowledgeable about politics and government. So, as much as I have been an advocate for myself, it made me nervous to be an advocate representing a whole community of people with disabilities.

With my bags packed, I got on a plane and arrived early Sunday morning. I decided to grab a map, explore and take a stab at public transportation, something I like to do whenever I’m in a new city. In the evening, when I arrived at the welcome reception, I saw many familiar faces, which both eased my nerves and also made me feel like I needed to step up my game.

Monday was a day filled with information and excellent speakers. I was in a room with over 100 advocates from all over the country learning the most up-to-date information about health care, Social Security, complex rehab technology, the ABLE act, Medicaid expansion and transportation, among other topics. After talking to the other participants, my nervousness turned into excitement, and after listening to the speeches I became overwhelmed and felt like maybe I didn’t know enough. But looking at those around me, I realized that as individuals we can each only know our own experiences and share that with others in hopes of educating and making some change in this world.

On Tuesday, not only was the weather great, but I was with the perfect team: a quad, a para, a walking quad and a person who has been a caregiver to people with SCI for over eight years. We were ready to kill it on the Hill! We prepared with a chart, color coded and all, that would help us quickly reference which issues each legislator was/was not supporting; we discussed and decided who would cover what topic depending on our experiences. We went into meetings expecting opposition but were pleasantly surprised — everyone was very receptive and welcoming.

I felt empowered and honored to have shared those few days with people like George Gallego, founder of Wheels of Progress and the recipient of AAPD’s Hearne Leadership Award (N.Y.); Finn Bullers, big time healthcare advocate (Kansas); Teal Sherer, actor and producer of My Gimpy Life (Tenn.); Matthew Tilford, Ekso Bionics ambassador (Calif.), and so many more. There was such a range of backgrounds, personalities, and stories that I feel like Roll On Capitol Hill 2014 could not have been better represented!

My first visit to Washington, D.C., was a success! As I sat on the airplane flying back to Chicago, I couldn’t help but smile and feel giddy that I somehow made a difference in just a couple days and that next year, 2015, the 25th anniversary of the ADA, wheelchairs will invade the capitol, and our nation will have no choice but to turn their heads, look, listen and do!


My Political Orgasm

Candice Minear, Missouri
Walking the halls and catacombs of Capitol Hill was what I coined a #politicalorgasm. Being a bit of a political junkie, I was not used to actually seeing the faces of politicians that I had only seen on television. Politicians get me more excited than actual celebrities. Politicians are the ones that affect our lives every day in how they vote on laws. Any chance you get time with them face-to-face is your time to sway their opinion in your favor.

Candice Minear

Candice Minear

My first meeting of the morning was with Sen. Claire McCaskill’s office. Although it was a positive experience speaking with her staff, I was slightly disappointed to have missed the senator. But as luck would have it, as we were waiting for an elevator to take us to our next meeting, Sen. McCaskill (D-Mo.) herself walked up behind us and offered that we ride with her in the special elevator for senators. We were able to quickly explain to her that we were with United Spinal and were just in her office discussing the policies we wanted her support on. Sometimes the best meetings are the informal ones.

As we passed through the catacombs to our next meeting with Sen. Deb Fischer (R-Neb.), we passed  the likes of Senators Tom Coburn (R-Okla.) and Kelly Ayotte (R-N.H.). My #politicalorgasm kept growing. Halfway through our meeting with Sen. Fischer’s aide, the senator herself popped in and joined us. As a fairly new senator, she was open to hearing our stories, but the most effective way to communicate the importance of the complex rehab technology we were advocating for was to show her what it is by tilting back and doing a weight shift in my chair.

Before departing Russell Senate building, we checked in with the office of Sen. Roy Blunt (R-Mo.) to see if he would be willing to snap a photo with us as Missouri constituents. We waited about 10 minutes, and were getting ready to head out when the senator hollered at us down the hall and asked if we still wanted a picture. We said sure and the man came walking down the hall to greet us. This got me more excited with the possibilities of running into some of the bigger names in politics.

In between trips back and forth across the Capitol, this group found time for a quick posed shot with a few of the Capitol police officers.

In between trips back and forth across the Capitol, this group found time for a quick posed shot with a few of the Capitol police officers.

As we began on our journey to Cannon House building, I happened to look down and notice that my wheelchair was almost dead, much to my dismay and the disappointment of my sister. We all knew what it would mean. She would have to push my wheelchair through the tunnels of the Capitol in order to get to the awards reception by 5 p.m. Even worse was the prospect of not knowing if there would be a wheelchair charger available for me to use. I called ahead to try to make arrangements so that somebody could meet me there, but there were no guarantees. So off we went looking like fools as I, a power wheelchair user, was being pushed through the catacombs and past representatives and senators. I realized how ironic it must have looked. We are here lobbying for disability rights, my chair breaks down, and I have to be pushed through the tunnels. Yet there was Sen. Lindsey Graham (R-S.C.) staring at us while riding one of the (inaccessible) shuttles built to cut down on the walk from one building to another. Surely this would open his eyes to how difficult it is being a wheelchair user when equipment breaks down and transportation is inaccessible.

At the end of this hallway, I saw cameras and microphones all packed into one corner. We stopped, unaware we were literally feet away from Sen. John McCain (R-Ariz.), one of the most respected men in Congress and a supporter of disability rights. He came over to shake our hands and told us, “Keep fighting the good fight.” And just like that he was gone. Even as a liberal, my heart still skipped a beat.


Eyes Open, Voices Loud

Rob Wudlick, Minnesota

Minnesota member Rob Wudlick made the most of the many opportunities to mingle during this year’s event.

Minnesota member Rob Wudlick made the most of the many opportunities to mingle during this year’s event.

Since my injury three years ago, I have been actively working in Minnesota to improve spinal cord injury research and access to therapy and fitness for the disabled through public policy. Meeting many new folks from across the nation representing their local chapters of the NSCIA at the Roll On Capitol Hill was encouraging. It was insightful to see what different groups are doing in their communities, from having monthly lectures to adaptive sports equipment rentals. Learning how state services differ from state to state and listening to the guest speakers describe the bills they care about was extremely eye opening. From the ABLE Act — which allows for more savings for education, transportation and medicine for SSDI receivers — to the Bike and Pedestrian Safety Act, which sets national standards for sidewalk curb cuts, paths and trails, everything was informative and motivating.

Tuesday, we hopped on the Metro, D.C.’s subway system, and surfaced a few blocks from the Capitol. With seven visits to representatives and senators in one day, we were in a constant scurry finding our way through the labyrinth of tunnels and trains under the Capitol. While describing the challenges of living as a quadriplegic, it was clear that our nondisabled representatives and aides had no idea of pressure sores, bladder issues, transportation needs and other problems that affect our daily lives. Seeing the compassion and change of heart come out from their eyes made me realize that the next time they look at someone in a wheelchair or vote on a bill that affects the disabled, they will have more knowledge and understanding of the policies they enact.

This conference opened my eyes to the needs and political headway being made for those who live with spinal cord disorders in our nation. Meeting new friends and acquaintances from across our country was a great experience. After several very encouraging visits to legislative offices, it really feels like one can made a difference. Politicians from both sides of the aisle want common sense practical legislation that helps those who need it most. That’s why it’s important to get your voice out.


A New Perspective

Pat Maher, Board Member
This was my first Roll on Capitol Hill and, honestly, I wasn’t sure what to expect. As many of us seemed to be by the end of our education day on the issues, I was more than a bit nervous anticipating our day on the Hill. I think I was feeling equally excited and nerve-wracked. United Spinal has its finger on many issues that are critical to the disability community, and our presenters covered a lot of ground — from complex rehab and urologicals to accessible and safe bicycle path infrastructure (and by extension wheelchair throughways)!
As a board member, I knew the breadth — and depth — of issues that United Spinal supports in D.C., the courts, and in our day-to-day advocacy through staff and chapters around the country. As the former president of NSCIA’s board and 33 years with a spinal cord injury, these are personal issues — or should be!

Pat Maher, right, chats with fellow United Spinal board member Marty Ball at the welcoming reception.

Pat Maher, right, chats with fellow United Spinal board member Marty Ball at the welcoming reception.

As the leadership for ROCH clarified the process for our roll in the late afternoon on Monday, teams began to strategize state by state. I convened with my group from Illinois — Steve, Reveca and Aileen. Each of us struggled at first to get our heads around all the information, knowledge, personal stories, background on bills, etc. that had been imparted over the previous eight hours or so. But we persevered and, ultimately, came up with a logical and repeatable approach for our meetings on the Hill. I should note that we met Monday evening for a dinner and planning session to which Steve, the consummate sales professional, brought his laptop to display and review a comprehensive Excel sheet, collating all the information that United Spinal had shared with us earlier, denoting our meeting times, members/aides and party, positions on each of our topics of interest, location of office, etc. He printed this out for each of us as a quick cheat sheet prior to each visit. It was a life-saver!

As for our day on the Hill, it was exhilarating, exhausting, gratifying and hot! I think I can write for my other team members in suggesting that we all contributed our expertise, backgrounds, and
passion to the day — and our efforts and impact would have been less without any one of us. We worked well as a team, making minor adjustments and getting stronger in our meetings as the day progressed. Every aide with whom we met was bright and engaging and seemed genuinely interested in our concerns. Some pressed us for more details or provided context on their senator’s or representative’s position. All treated us with respect and dignity, which is more than we experience sometimes in our day-to-day lives.

For more on the Roll on Capitol Hill, visit www.unitedspinal.org/events/roll-on-capitol-hill.

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