News


The Squeaky Wheel

“From the roots” means with the people, not for the people.

ann eubankAs a grassrooter, within the community of people with disabilities, I have opportunities to develop close relationships with some wonderfully interesting people. People I consider friends, and together, we make up a rich network. This network is bonded together by the belief that all Americans have the right to fully participate in the lives we choose. Unfortunately, people with disabilities are often denied the rights able-bodied people (bi-pedals) take for granted everyday. I digress; I will rein it in and get back to grassroots.

Grassrooting can be chaotic at first with few linear measurements of success. It’s chaotic in terms of trying to organize people from all different backgrounds, abilities and needs. Yet, when we are clearly successful it is extremely energizing, I feel like I am part of a collective vision, one greater than I could have ever created on my own. My friends and advocacy partners may feel the same way. It is truly awesome to make something happen from the bottom up, for all of us to be empowered in the process. This can be referred to as, “over the top underdog bravery.” (Godin, 2010). Bottom line: If we don’t do something about the lack of access to good wheelchairs and service, who will? As clinicians the onus is on us. Is that not why we went to therapy school; to help others be more independent?

The average person on the street, who is not disabled and may not know anyone with a disability probably won’t know that access to good wheelchairs is in great danger. It is in danger because insurance entities (all of them), do not value wheels. They will pay $100,000 for a prosthetic leg and deny a $5000 wheelchair. Another reason is that people who use wheelchairs do not have expensive lobbyists in Washington to bring attention to their cause.

Again, back to grassroots. I don’t lead the UsersFirst movement I facilitate, by connecting people and creating space where organization and mobilization is possible. When we are organized and figure out how to mobilize, we begin to have a voice. This united strong voice is gaining momentum and we are making friends doing it.

UsersFirst embraces all people, regardless of disability or not. We need every voice that cares that Americans have access to good wheelchairs. What good is the American with Disabilities Act if we don’t have a wheelchair that works in our lives?

Success

Recently, UsersFirst rallied wheelchair users from 34 states and the District of Columbia to meet with congressional representatives to encourage them to sign on to a bill that will increase access to good wheelchairs. The bill’s name is Ensuring Access to Quality Complex Rehabilitation Technology Act of 2013 – HR 942 in the House and S. 948 in the Senate. The bill states that complex wheelchairs should be treated differently than a hospital or airport transport chair.

Via social media, people from across the country contacted UsersFirst to facilitate congressional meetings. Through our collective efforts we have created political leverage. We bring real-life examples of how people with disabilities are affected by specific policies; Congress is hungry for these stories. They cannot be experts in everything and we must teach them about this type of equipment and how vital it is to remain healthy and independent.

Another indication of success occurred last weekend at the Kansas City Chapter of national Spinal Cord Injury Association’s Ability Expo. The expo attracted over 1000 attendees, 127 vendors, and featured local artists with disabilities. What made this event even more special is the advocacy component. My colleague, Finn Bullers, a UsersFirst advocate, journalist, wheelchair user, father, husband, friend and chapter policy advisor presented two seminars and was interviewed by the local news. Finn is considered a “grasstop” because he stays abreast of policies that affect the community of people with disabilities and is willing to speak out. His voice is heard through his blog on the UsersFirst website and other social media along with personal visits to congressional representatives in Washington and locally. His energy is palpable to all.

Finn has been responsible for two congressional representatives officially supporting H.R. 948/S. 942, the good wheelchair bill. His enthusiasm and ability to communicate quickly and affectively brings vitality to the grassroots efforts. One person really does make a difference.

If you would like to be part of making a difference in the lives of people with disabilities, please go to the website and join. If you spent 1% of your week on advocacy, it would mean the world to wheelchair users. Please feel free to contact me (aeubank@nullusersfirst.org) if you are interested in advocacy at any level.

—Ann Eubank, LMSW, OTR/L, ATP, CAPS