The Lived Experiences of Wheelchair Users Instrumental in Leading the Charge for Critical Policy Change
The slogan “Nothing About Us, Without Us,” used to communicate the idea that no policy should be decided by any representative without the full and direct participation of members of those groups affected by that policy, reverberated through the Halls of Congress as United Spinal advocates rolled through security checks to meet face to face with their representatives on issues critical to their quality of life and independence.
Over 100 advocates from 29 states and the District of Columbia attended United Spinal Association’s 10th annual Roll on Capitol Hill (ROCH) event on June 12th to 15th to meet with their Congressional representatives on key issues affecting the spinal cord injury and disorder (SCI/D) community.
ROCH is United Spinal’s annual flagship advocacy event, gathering the organization’s members and supporters to encourage elected officials to support policy initiatives that empower and promote the independence and quality of life of people with disabilities.
“Roll on Capitol Hill exemplifies our passion for the empowerment and advancement of people with disabilities. Everyone that has gathered with us, from member advocates to dedicated partners, share a vision of a future where people with disabilities can live independently and pursue their dreams. And that vision begins here in Washington, as we ensure future generations of wheelchair users have a seat at the table when policies that impact our lives are created,” said Vincenzo Piscopo, president and CEO of United Spinal Association.
After canceling the event in 2020 and hosting a fully virtual event last year, wheelchair users rolled through the halls of Congress again for first-ever hybrid virtual and in-person ROCH, completing more than 150 visits to lobby for the SCI/D community.
The visits offered advocates the opportunity to share their experiences navigating the challenges of living with a disability, and to advance their fight for civil rights, accessibility, social supports, and inclusion within their home states to the national level.
“This was my fourth Roll on Capitol Hill. One of the things I really enjoyed was that my representatives remembered talking to me in the past, so having that rapport makes a huge impact and keeps policymakers engaged with you. I encourage my fellow advocates to follow up, keep attending these events, and make your voice heard,” said Adam Lane, United Spinal member from Oklahoma.
Alberto Salvi, a United Spinal member from Florida, added, “United Spinal put on an excellent program. I learned a lot, especially from all of the attendees. There was lot of synergy with my fellow advocates. One thing I found to be our strongest points, especially meeting with senators and legislators, is that we have strength in numbers. When you go in as a team, everybody brings their own individual skill set an experiences, that tremendously impacts the conversation, when you’re talking to legislators.”
“It was such a humbling experience to finally get to see everyone in person that I’ve worked with nationally through virtual conferences. Hearing the stories of how many wheelchair users got on a plane alone for the first time and how far some traveled just to advocate for our community was incredible,” commented Ali Ingersoll, United Spinal member from North Carolina
ROCH focused on the following issues:
- Supporting more robust SCI Model Systems funding to ensure that newly-injured individuals receive necessary healthcare and services
- Ensuring passage of the Air Carrier Access Amendments Act and advocating for other protections for travelers with disabilities
- Emphasizing the importance of personal care services to pursuing economic independence and mobility including the elimination of subminimum wages for people with disabilities
- Advocating for Department of Veterans Affairs funding for automobile grants for disabled veterans that are necessary for community living
- We also seek action on outdated and restrictive federal regulations that prevent all wheelchair users from having access to the wheelchair that’s right for them.
On June 13th, United Spinal hosted educational sessions throughout the day to prepare advocates in attendance for their Congressional meetings. The day kicked off with a keynote address from Emily Voorde, assistant director, White House Office of Public Engagement.
“Wherever you find yourself, in whichever space, you are bringing that disability lens to the conversation. Whether that be in transportation, education, or in healthcare, or working with your municipal government to build a new park or whatever it may be, we are bringing our lens to conversations in some meaningful way,” said Voorde.
On the evening of June 14th, ROCH hosted a Congressional Reception that honored and celebrated Congressional leaders and United Spinal advocates for their achievements in disability rights.
Congressman Robert C. Bobby Scott received the Outstanding Congressional Leadership Award for his leadership in introducing the Transformation to Competitive Integrated Employment Act (TCIEA), which prohibits wage discrimination against people with disabilities and provides for services and supports for people with disabilities who are employed in integrated work environments.
The first quadriplegic to serve in the US House of Representatives, Congressman James Langevin, received the Congressional Lifetime Achievement Award, for his decades of service to the disability community, including his work on the ADA Amendments Act and the Affordable Care Act.
“‘Throughout my career I’ve always enjoyed working with United Spinal on the goal of making our community more open and accessible for all. Your advocacy truly matters and receiving this award is such an honor and I’m truly humbled. I’m so proud of all the advocates that keep coming back again and again because it’s so important that we collectively make sure that our voices are heard here on Capitol Hill. Thank you very much for your advocacy and everything that you do to improve the lives of people with disabilities,” said Langevin.
Langevin drove home the importance of people with mobility disabilities having a seat at the table when policies are created.
“We need all of you to be involved in the political process. Please think about running, whether it’s in your local community, at the state level, or for a congressional seat, you can do it! Put yourself out there. It takes a lot of courage, but it’s a small piece of the courage you have every day to live your lives actively and independently. So spread the word, we want more people with disabilities in Congress,” Langevin added.
The Roll on Capitol Hill 2022 Advocate of the Year Award went to Richard Bagby, who is the Director of United Spinal Association of Virginia. In particular, United Spinal recognized Bagby’s local advocacy around complex rehab technology (CRT) and opposing physician-assisted suicide, as well his role in establishing the Sheltering Arms Institute in Richmond, VA in 2020, a world-class rehabilitation hospital and research center which became a Spinal Cord Injury Model System not long after opening.
“Thanks to United Spinal and its staff for yet another successful Roll on Capitol Hill and all attendees advocating for positive systematic change that will benefit all people with spinal cord injuries and disorders. I’m honored to be alongside side all advocates at ROCH, whether it’s their first roll or tenth. It’s a pleasure to be advocating with you on behalf of our entire community,” said Bagby.
United Spinal also recognized ROCH sponsors and allies who have provided invaluable support in promoting its mission and advocacy efforts.
“We at Genetech feel very strongly that embracing diversity and inclusion fosters innovation and improves scientific and clinical outcomes, while also increasing equitable healthcare access for all. But achieving that is remarkably complicated, even in the best of circumstances. Where United Spinal comes in is that they keep this goal at the top of mind when we’re considering all projects and partnerships. And that’s the value of having a partnership with United Spinal. They encourage us to keep going to incorporate the disability community as consistently and persistently as possible in all that we do,” said Jo Dulay, patient advocacy relations lead at Genetech.
For more information about Roll on Capitol Hill, visit https://unitedspinal.org/roll-on-capitol-hill/.
To view the ROCH public photo gallery, visit https://unitedspinal.smugmug.com/Politics/ROCH-2022/.