September 27, 2011
Ann Eubank, LMSW, OTR/L, ATP
VP Community Initiatives
UsersFirst, a program of United Spinal Association
Dedicated mobility specialists taking on challenges together.
UsersFirst’s recent activity has given me the opportunity to speak with hundreds of people from varying backgrounds and organizations. A week ago, UsersFirst lead a leadership course for clinicians (out in the woods) and this past weekend we participated in the Independence Expo––a consumer conference. All the rich conversations and interactions––gifts really––have filled my heart with hope and determination and inspired me to share how my community affects me.
Reflections from the Road
If you are not mindful, the world might beat you down by declaring you don’t fit in, insisting you change, or implying that you are not enough. Those thoughts can ferret their way into my world at any moment, leaving me feeling alone and ineffective. But, remarkably, when I am in community, reaching out and connecting––even if it is in my own clumsy way––the negative thoughts almost disappear. And then I remember my nature, which I think is human nature––to make space for everyone to be heard, to be seen––to matter.
When I am connected in my community I feel like I matter. When I feel seen and heard I am more apt to understand that I need others and others need me. It is truly amazing how being connected can give us the energy to get and stay connected, to have compassion for everyone––making space for EVERYONE to participate.
During my recent travels, collaborating with all types of people and organizations to continue pushing for the right of freedom of movement, it become very clear to me how much we need each other.
UsersFirst is a movement from the bottom up, meaning––“of the people” and inherently inclusive. “The people” are you and me and there is space for everyone. If this movement is unsuccessful and we lose the ability to access appropriate mobility equipment, many advancements of the disability community and the health care professions (yes, we are in it together) is for naught. That thought is unacceptable and motivates me to continue reaching out to you as someone who cares that Americans have the right to the freedom of movement.
We need each other. Think about it––if millions of Americans are “homebound”, which, I think, translates to “bedbound” then we will be sicker as a nation. I thought that was what all the fuss was about in Washington, that health care is expensive. If humans are not able to move, in every aspect of the concept, will we not be more expensive due to illness?
Logically and emotionally we need to STAY CONNECTED AND ACT TOGETHER.
Here is a reminder of what you can do today:
- Sing up yourself and everyone you know at www.usersfirst.org
- The more people signed up, the more clout we have when trying to create positive policy change.
- “Like” UsersFirst on Facebook at www.facebook.com/UsersFirstAlliance – and – ask your network to “like” UF.
- The more people signed up, the more clout we have when trying to create positive policy change.
- Tell your wheelchair story at www.usersfirst.org/submit-your-story/
- Ask any wheelchair question at usersfirst@unitedspinal.org
Getting a new wheelchair is very scary and exciting at the same time. On one hand you get excited by the newness of a chair. It’s like the smell of a new chair and no scratches. everything is brand new. Yet when the new chair doesn’t fit it’s so difficult to not get frustrated and feeling that there is no recourse on an exchange. One starts to think, “if only the PT listened to me”, “if only I spoke up a bit more”, “if only the insurance paid for a chair that really gave me the independence I deserved”. It’s so great to have a forum like UsersFirst where our voices can be heard.
Thanks Ann! I really appreciate all the people who work hard to improve mobility in all its forms.
The vast resources and huge pool of creative, talented professionals is truly inspiring, and more importantly, hugely encouraging to all of us who work and live with such challenges. I look forward to maximizing my connections with all the resources we have these days like UsersFirst. We can do this, and do it well, thanks to team members like UsersFirst.