My Roll on Capitol Hill



From Kara Aiello
 
Flash Mob near Capitol Hill Kara is 3rd from right)

About two weeks ago, I participated for the second time in an amazing event known as the Roll on Capitol Hill or ROCH in Washington D.C.  Sponsored by United Spinal Association, ROCH in an annual legislative advocacy event that addresses issues that impact the health, independence and quality of life for individuals living with spinal cord injuries and disorders.So every summer, people with and without disabilities come together in D.C. for four days to learn, advocate and educate to our Congressional leaders' policies affecting the everyday lives of people with SCI and related disorders. Although I do not live with a SCI, having a disability from birth (Osteogenesis Imperfecta-Brittle Bones) makes this event as important for me as all involved, since the policies on the table affect us similarly.  What these policies give to us as individuals, helps us to give back and be contributing members in our communities, which makes a better world for everyone.      
   
The event isn’t all work, as important as that piece is; it’s also loads of fun and a great way to meet people around the country who, regardless of disability, share a common experience.  It’s not to say that our disability experiences aren’t different, be it we are newly injured or face a disability from birth, but it’s nice to meet other wheelchair users or people who have shared experiences and can relate.  Examples of shared experiences include being stared at (not that we don’t check each other out too, ha ha), or being around persons who are standing and tower over us (although I met some chair users who towered over me as well). And it was nice to talk to people eye to eye, joking and laughing about shared events and experiences in our lives that aren’t always understood out in the world.  But it’s also important to add that people who are there and don’t live with disabilities bring their own understanding, compassion and experience to ROCH, United Spinal and our own personal lives.  We have board members who have loved ones who live with SCI or related disabilities, rehab staff who spend their lives helping people regain a quality of life out in the world, and countless family members and friends who want to be a part of their loved ones’ journey, and that makes for a great community of which to be a part. It’s also the only event I have attended where I have met more than two people with the last name of Aiello and are not blood relatives, and all we can say is,“I never meet anyone with my last name.”   

The conference was a whirlwind event that began with a night of fellowship, learning about ROCH and a meet and greet of new and familiar faces.  We met at the Grand Hyatt Hotel in D.C. where many of us stayed and the bulk of the conference was held. For new members who attended, an hour meeting prior to the reception was held that introduced ROCH, and then the night began with all of us coming together.  Although I met many new faces, it was nice to see some familiar ones too and see the many cities and states that were represented throughout the country, as far away as Hawaii.  Randy Duchesneau, our local chapter president who attended this year’s conference with me and was there with his family, has attended ROCH at least three or four times before.  Hanging out with Randy for the next few days would be a treasure trove of education for me as Randy is deeply passionate and knowledgeable about the topics we came to discuss and if anyone could get this across to the challenges that lay before us, Randy could.  In addition to the familiarity of the reception, some nice surprises unfolded for me as well. We had an awesome dance performance from an all-female wheelchair dance team out of LA called the Rollettes. There I met a fellow Aiello and ran into a friend Daniela, whom I got to know last fall in Pasadena CA at The Raw Beauty Project. Daniela attended this event to help promote Infinite Flow, which is a Wheelchair Dance Company out of LA that came to be a part of the event and invited ROCH members and in the D.C. area to take part in a Flash Mob Dance near the Capital and at Union Station.

On Monday we spent a full eight hours at the hotel, learning about the Bills we would be discussing and listening to speakers and panels talk about various important topics that affect the disabled community.  But the most important topics of the day centered around three to four important Bills that we would be heavily discussing while at the Capitol and I would invite you to learn more about.  The first is the Disability Integration Act which, through the support of Medicaid, helps younger persons with disabilities have the option to return to the community to live versus living in a nursing home setting.  Another is the Complex Rehab Technology Bill which talks about the need for persons with SCI or other disabilities needing properly configured wheelchairs or other mobility devices to have a greater quality of life out in the world. I use a power chair when out in the community or at work that was specially measured for my mobility needs and helps reduce stiffness throughout the day in my hips and back and creates a greater independence for when I go shopping or assist my residents in their own wheelchairs by pushing them from one area to another.  The important issue is that Medicare does not cover the more complex chairs or other devices needed so persons on Medicare cannot obtain the equipment that they need.  This will then affect people’s quality of life in the long run and reduce or prevent people from being active participants in their day to day lives.

The other two centered around a Bill called HR 620, which highlighted a Roll Back on the ADA or Americans with Disabilities Act; an important piece of legislation that protects the rights of all people with disabilities when it comes to obtaining jobs or making sure public settings meet the needs of wheelchair users or various other disabilities such as visual, hearing or intellectual issues. 

I discovered that learning and relearning these various Acts helps me to better understand how to advocate for myself. These Bills are there to protect and help us achieve our goals and show our abilities, and that is a right that is important for everyone.

On Tuesday was the ROCH event and, although a long day, was fast paced and a rush to say the least.  How it works is that persons from each state are assigned to meet with their local representatives and have scheduled visits for about 30 minutes throughout the day.  Randy was able to set up meetings for two visits that were meant to be drop offs and not direct visits.  We met with representatives for Congressman Meehan, Tim Murphy and Senator Pat Toomey to name a few. Speaking for myself, I found everyone friendly, engaged and already open and supportive to some of the Bills, so that made our visits all the more positive. Now that’s not to say everyone had this experience, but it is par for the course and why we go in the first place and do follow ups as well.  But what an amazing experience and one I hope to repeat yet again.

After the long day of important meetings at the Capitol, I joined the Flash Mob out in a park near the Capitol where I arrived a few minutes late but was able to jump right in and perform with the group.  Once we finished, we made our way over to Union Station where we fortunately were able to perform inside in the main dome of the station for tons of people going in and out throughout the day. And because it was about 99 degrees with humidity, none of us were complaining about being inside for that reason alone.  We had kids and adults and persons with and without disabilities dancing and people loved it.  I have never been in a flash mob before, let alone a dance piece, so this was definitely a highlight of the event and it promoted inclusion and showed that human beings just know how to have fun.

After the flash mob event, we returned to the Capitol to take part in a closing reception and meet with representatives who were invited to the event. Members of United Spinal spoke or were awarded with special honors for their service to the organization.  All in all, it was an amazing week in D.C. and so much more meaningful to me than the first time I went.  I hope readers will want to learn more about United Spinal Association and ROCH and more importantly about these important Bills meant to serve our daily needs and lives as we continue to venture forth into the world. Roll forth and prosper.

Important sites:

To learn more about the national and local chapter of UnitedSpinal Association Check out:
Please check out the Rollettes website and Infinite Flow-both out of LA

About the Author:
Although Kara has Osteogenesis Imperfecta which simply means brittle bones, Kara has studied dance for over 16 years now and currently dances with American Dance Wheels Foundation. But for the bulk of her dance career she danced with Kardon..  Kara works as a Recreation Therapist at Meadowood Community for older adults and has an LSW in Social Work.  In addition to writing  for mobileWOMEN, Kara also writes for Amnesty International and United Spinal Association  Kara also sings with the Academy Chorale as the arts are an important part of her life.

 

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