What an amazing time I had with the Roll on Capitol Hill 2015 in Washington DC this past week. Coming to this event I had no idea what to expect and have not done advocacy work from a political stand point so this was an eye opening experience. I remember the daunting feeling I had on day one when I sat with my fellow advocates going through the important topics of discussion that would be shared and advocated the following day on The Hill. Issues of Complex Rehab Technology and Equal Access to Transportation were the main hot spots of discussion along with not cutting Medicaid Funding to help keep people at home and not in nursing homes. As the day came to an end, I found myself overwhelmed with the load of information but determined to bring it to life the next day when meeting with my representatives.
It was a fascinating experience going to the Capital. We saw many groups from dieticians advocating for better health and nutrition for the American public and family members from California advocating for affordable housing regarding adults with intellectual disabilities. And then there was us, the United Spinal Association from many corners of the U.S. life experiences and disabilities (and without as well) uniting in a common desire to have our voices heard, that we matter, and can impact our world for the better if given that important chance.
As we entered our first meeting regarding Representative Bob Brady and met with one of his aids, I was humbled by the experience of what I had yet to learn and even though I had a full day of education the day before, nothing would create a better opportunity for learning than the actual meetings before me. Janet Parker was an amazing asset to the discussion as she not only has a brother living with a disability but has the experience and knowledge as a PT that was most crucial to helping those before us understand why we were here. And then as the day progressed, I saw how my own stories would impact change and understanding from a firsthand account. But I was enlightened as the meetings progressed, by what I learned about the important topics we were to discuss. For example, I only recently had to go through the complex process of meeting with an OT from Moss Rehab to obtain a new power chair. Historically I went through the motion of getting a chair fitted for my size and design for style, but never went through the process of getting a chair that would create more comfort for my body and enhance my needs that would help me sit more comfortably through the busy day and help me be more productive to the world around me.
This insight also helped me to be more aware at how complex disability is and the necessity of this bill in helping all persons with disabilities be more proactive in society, lessen chance of skin break down for example that can lead to bigger issues, and keep people out of the hospital which lowers cost and enhances quality of life for all at the same time. I also came away with great knowledge of how Access to Transportation works and benefits all of us in the end. I live in the country side of Blue Bell PA with no sidewalks or safe access to Montgomery County Community College where I could catch a bus if needed. I am fortunate to have a driver who has a lift as he uses a chair as well, and have back up transportation as needed. But if my driver is out of the loop and can’t access other transportation, I could not safely wheel to MCCC to catch a bus to go places as I have no safe access to getting there. And this impacts all of us wheelchair users or not as anyone would be playing Russian roulette walking their dog for example on my road.
In sharing these stories, I found great comfort from the positive responses of the aids we met as they shared how common sense these requests were and in knowing persons with disabilities themselves, impacts everyone for the better. And to our delight, especially Janet’s, we met directly with Chaka Fattah who knew Janet was his constituent, He signed onto the bill for Complex Rehab Technology and shared that he knows many people with disabilities in the Philadelphia area. So again was on board from the get go and allowed us to have a few photo ops with him.
To end, I loved meeting my fellow advocates who although had different disabilities, came together for a common cause that impacts all of us. And persons without disabilities who were there because of people they knew, their professional connection to those with disabilities or had experiences of disability themselves even if they were to make a steady recovery over time. I learned much, had a ball of an experience, and would love to go again in a heartbeat. Thanks for giving me this chance and experience of a life time.
— Kara Aiello