Reflections on CP Awareness Day in Washington DC

By: Richard Ellenson

Yesterday, I spent my first National Cerebral Palsy Awareness Day in the nation’s capital. It was particularly special - as I was with Cynthia Frisina, our new VP/Partnerships, as well as Wendy Sullivan and Brad Searle, two of CPF’s new Advisory members – in other words, the individuals who were leading Reaching For the Stars when it merged with CPF.

CP Awareness Day is a thrilling moment. It’s a day when all of us share a sense of community, of the breadth of our population, and of the potential –tapped and untapped – in our world.

So many of us wear green: green ribbons, some piece of green clothing, or one of the GoGreen4CP shirts the Foundation offered. That is our way of showing others of the importance of our work.

What was remarkable about yesterday, however, was sharing this with so many people in government – and feeling their support.

We met with key staff members from the offices of Senators Hassan and Gillibrand, as well as other areas.  The conversations were rich and detailed. The individuals had deep knowledge of the challenges faced by people with disabilities and the many factors within the government which affect the ability to support the critical needs of people with CP and related disabilities. It’s staggering to think of our issues within the backdrop of all else that goes on in that white marble city.

To end the day, we met with Senator Johnny Isakson, who has sponsored the National CP Awareness Day resolution since 2006.

Two things worth noting. One: our cause is one that is understood and embraced. There are many people on both sides of the aisle who want to find ways to help. Two: the nuances of getting legislation passed are even more complex than one would imagine. It’s about knowing the right people, the right time, the right message, and the right balance. Things do not happen in a day.

In that light, it was deeply rewarding to see first-hand the impact that has been made by Reaching For the Stars over the year. And it’s deeply compelling to feel that the strong voice all of you have helped build at CPF can be a catalyst for continuing this great work, and continuing to drive awareness and increased funding opportunities.

Finally, walking through the hallways of the Dirksen, Russel and Hart buildings, visiting the offices of Senators, meeting the sharp energetic aides, and bringing awareness of our community and needs ….. I was continually struck by importance of our collective voice, and of the need to keep that voice loud, consistent, articulate, unwavering. With our community, as with any one of our individual families, we have accomplished so much, but there is even more to do. As we meet each challenge, others reveal themselves. With every transition, we find ourselves with a new set of opportunities and issues. Life is a complex process – and it is even more so when it is touched by disability. 

Our world is not easily understood by others. In fact, when meeting with Senator Isakson, he shared that he himself has now been touched by disabilities – in that he has been diagnosed with Parkinson’s Disease. He told us that he had begun his career involved with Special Education teacher, as did his wife and so he always cared about this world. He then added so eloquently, But as I’ve learned to live with Parkinson’s I have moved from sympathy to true empathy.”

Empathy is perhaps the most elusive of human characteristics. But it is also the one that should be most cherished – for when we understand the challenges of others, we often find our own best selves, and do what we can to help others reach it as well. 

And in that spirit, a special shout out to Senators Isakson (GA), Hassan (NH) and Casey (PA) for sponsoring this year’s Resolution, and sharing in our message

CP Awareness Day takes place once a year. And it’s an important moment for us all. But don’t let it stop there. Let’s use it to remind ourselves of our shared mission. Keep telling our stories. Keep sharing our vision. Keep it up – for only when others are aware can we really achieve all our goals.