Blog

Fighting for Disability Rights on Capitol Hill

Laura Power, a United Spinal member from Pennsylvania shares her experiences joining other wheelchair users in fighting for disability rights at United Spinal’s Roll on Capitol Hill this past June in Washington, DC.

laura power
Laura Power (right) and Kierstin Coup at Roll on Capitol Hill 2018.

Sunday, June 24, 2018-Roll on Capitol Hill Day One-Welcome

Ladies and gentlemen, Roll on Capitol Hill (ROCH) has finally arrived! My PCA, Kierstin Coup and I have just set foot on the dark wood floors of the Capital Hilton hotel lobby in Washington, DC. Once off the elevator we are warmly welcomed. We enter the South America room, and I attempt to mingle as people begin filing in. The room itself is large and lovely. As people come in, I begin to attach names and faces with the voices I heard on the phone. United Spinal staff members Brook McCall, Ian Ruder, Bill Fertig, and Peter Wayne have already introduced themselves to me.

Later we form a circle, and I learn more names and positions. After some last-minute preparations are made, I go to orientation for rollers who are attending ROCH for the first time. At this point Alex Bennewith, United Spinal’s VP of Government Relations, gave us an overview of what the Capitol Hill visits would be like. She stressed the importance of making connections and keeping an eye on the clock. United Spinal’s policy team unanimously stress the visits when done right make a real difference. Shayla, the 18-year-old college student from Pennsylvania, beside whom I sat is very bubbly and enthusiastic. She also impresses me with how frequently she blogs. We precede from there to the welcome reception. One of my favorite parts of that was seeing everybody I met share their enthusiasm in ways that were not common to the professional setting earlier. I also met a multitude of intriguing people. These included Vincenzo Piscopo, who created the Wheels of Happiness Foundation. I am looking forward to speaking to him more and learning about corporate philanthropy. I had the pleasure of meeting Katie Smith who heads the chapter of United Spinal in my hometown, Pittsburgh. We will be in touch. I am inspired by the way the people I have met have established themselves, and I hope to one day follow in their footsteps.

Monday, June 25, 2018-Roll on Capitol Hill Day Two-Education Day

I continue to be amazed by the scope of this event. I am meeting people I know I would not have met otherwise. For instance, I am sitting across the breakfast table from United Spinal member Wes Holloway and his dad from Texas, enjoying their stories and assessments of accessibility at home. Wes has an art degree and is now working at an arts nonprofit in Texas which gives underserved communities access to art. The purpose of education Day, as Alex explains, is for us to learn about the bills for which we are lobbying and how they affect the disability community.

Next on the agenda is the keynote speaker, Mary Lazare. She is Principal Deputy Administrator and Acting Commissioner on Disabilities at the U.S. Department of Health and Human Services’ Administration for Community Living. I appreciate that she is knowledgeable about the issues facing the disability community. I am finding it very interesting to learn about the Jama case, and its implications. It seems there are many people I could help if I find a use for this knowledge.

I am very impressed with the level of expertise of all the panelists and also extremely grateful for the background information I was given prior to the event. It has been fun to absorb all the stories the members are telling as well. I was not fully aware of the scope of the air travel problems, until I heard so many accounts of it really adds a new layer purpose to what we are doing. I like the passionate delivery of the speeches on the civil rights and health care panels. They offer a new perspective on the current state of legislation affecting people with disabilities. I did not previously know about the potential effects of the school choice system on special education.

The accessible hotel and Airbnb options are something I could definitely use. It is extremely empowering to know that people from all backgrounds support our cause. From those in the civil rights sphere to the corporate sponsors, I am grateful that so many people seek to help us.
The ROCH Sponsor Expo is awesome, and I was disappointed that I was only able to visit six booths. Everyone involved with it is incredibly personable, and I would have liked to network with them further.

There is a mock hill visit at 4 pm while thinking through all the useful information, I simultaneously enjoyed Alex pretending to act completely disengaged.

Tuesday, June 26-Roll on Capitol Hill Day Three-Hill Visits

My first hill visit is scheduled at 10 am. I must admit I am extremely nervous but also extremely excited. As we approached the first office, I learned about the difference between LC (legislative correspondent) returned correspond to letters and LA (legislative assistant) interactive liaisons between constituents and Congress members. It surprises me to know how many different individuals it takes to run a government office.

It is also interesting to learn about the legislators whose offices I met with. My group was tasked with discussing support for the Air Carrier Access Amendments Act (HR 5004) and (HR 3730) the complex rehab technology bill, both have been recently introduced in the House of Representatives. I am very grateful to the offices of Congresswoman Eleanor Holmes Norton, Congressman Ted Deutch, and Congresswoman Ileana Ros-Lehtinen for their time and attention. I enjoyed the hill visits very much!

The Congressional reception is very impressive. The stories provided by the award recipients gives me hope for the causes for which United Spinal Association is advocating. I learned about the efforts of Sen. Tammy Baldwin in securing the passage of the Air Carrier Access Amendments Act, and I learned about Sen. Bob Casey’s history of championing disability rights.

Wednesday, June 2- 2018 Roll on Capitol Hill-Day Four-CAC

At breakfast, I sit with the dynamic duo of Leah and Tipper, I have been hanging around with Leah periodically throughout the entire week. Arkansas is the latest on a long list of states, she has called home. She is so different in the best way possible from anyone I’ve ever met. I could talk to her all day! It is amazing how much a person can grow to appreciate people after just four days with the help of shared objectives. From the feedback session, it appears most of us were well received, I am somewhat surprised when in the midst of collecting everyone stories Alex offers me the microphone. I’m unsure how to categorize this fantastic experience, I recount my chance encounter with Rep. Gwen Moore from Wisconsin while waiting in line for an elevator. I thank all who were listening for warmly embracing the stories I had to tell. One of those who thanked me for speaking afterward was Kim Harrison, she works for Lowes and is the one of the many lovely people at United spinal Association’s Corporate Advisory Council meeting. All too often pictures are painted to make the world appear as though the corporate and disability communities are constantly at odds with each other. However, the most wonderful thing I am learning while at this meeting is how much the business community only wants to work in tandem with those with disabilities to make life better for everyone. I cannot reiterate enough how grateful I am that so many corporate sponsors donated their time, energy, and kindest representatives to making all of this is possible.

I fully intend on keeping in touch with my fellow ROCH participants despite the fact that they come from all corners of the country. What they had in common was that they were all extremely warm and welcoming. My sense of purpose as an intern for this organization has grown so much. I was exposed to aspects of the process of advocacy that I had not considered and learned a great deal about the civil rights, transportation issues, and health care currently facing people with disabilities. Beyond that I now know the importance of connecting with others who are trying to create change. I will use what I have learned in the future. This experience has changed my life, and I am definitely planning on returning to ROCH as a member next year.

To learn more about United Spinal’s Roll on Capitol Hill, visit http://www.unitedspinal.org/events/roll-on-capitol-hill/.

Laura Power
United Spinal Association

Laura graduated Summa Cum Laude from Edinboro University in May 2017 with a B.A. in Sociology and a minor in Biology. While at Edinboro, Laura was a four year member of the Student Government Association, co-President of Delta Alpha Pi (Beta program), President of the Sociology Club and a member of the National Society for Leadership and Success and was the recipient of the Outstanding Sociological Award Service Award. In addition to her academic work, Laura has volunteered with the Red Cross on their Pillowcase Project (Disaster Preparedness Campaign), the University of Pittsburgh’s Bioengineering Summer Camp program (group leader) and the Carnegie Library’s Summer Reading Extravaganza. Additionally, she participates in the Pittsburgh Junior Sports Clinic on a monthly basis. Laura is interested in pursuing a Master’s degree in Public Health and recently completed the GRE. She’s currently engaged in advocacy work through the Pittsburgh Consumer Health Coalition’s Health Committee for People with Disabilities. On a personal note, Laura enjoys working out at the gym, loves yoga and is a voracious reader.