Part 1 of 2 An activist’s dream. That’s how I would describe the trip back to Washington D.C. for the “People’s Action Organizing Revival: a call to revitalize the movement for social justice by strengthening skills of community organizing at every level, and in every organization.”
I arrived to find about a thousand people attending this conference, all of whom I was about to speak in front of. I felt like a schoolgirl with my knees knocking with stage fright. These folks represented the leadership of organizations from across the country. I lost count of how many states were represented. I’ve worked with activists my entire life but had never done anything on the scale of what I was about to experience.
I held back tears as person after person thanked me for sharing my story. These people shared the videos from the town hall, and the ones of me telling the story. People asked me questions about CRPS (Complex Regional Pain Syndrome). It was overwhelming to feel so seen, yet that was only the start of events that I didn’t even realize belonged on my bucket list.
The event had a large opening, complete with a marching band, energizing the over one thousand attendees and staff. There was incredible energy in the room, and I realized while sitting on the stage, who these people are. They are the doers, the ones who protest, write letters, or even make appointments to meet with the elected, and have their voices heard.
When it came to my turn to speak, I felt a surge of energy from the force of the applause in the room. These people are energized and able to do the legwork that I can only dream of. These are the people who signed the petition and shared the videos. The doers are in fact OUR team. Each of these people uses grassroots activism and organized the people in their states to fight the battles that everyday people face. They listened intently to me speak of our plight. How we struggle for diagnosis and treatment. The devastation is caused by private for-profit medical insurance companies, denying more than they approve, especially for those with rare illnesses like CRPS or Small Fiber Neuropathy.
The roar of the crowd was overwhelming, and I took a moment to just breathe. In this journey, I have seen that it is really important to be present and take in moments like this.
The next day was all about learning and connecting. People broke into different sessions focusing on various tools. Some concentrate on techniques, like how to deep canvas and have discussions on hard conversations. Politics in the last few years has become more volatile, making it even more intimidating to speak to the elected about the forever sick. For my part, we focused on having conversations with people who don’t agree with you. I didn’t realize how much of that skill comes from the lives we live as warriors with CRPS.
We have all experienced it, dealing with people who have no idea we exist, or the blocks we face in accessing healthcare. I’ve found myself defending my treatments to the well-meaning pseudo-expert trying to tell me how to “cure” CRPS. The more we speak up and become real to the world, the more possibilities there are. That unfortunately means lobbying the elected in order to protect our community and fight for access to life-changing treatments, typically blocked by nothing more than a lack of money. My goal at this moment is to get Congress to hold hearings on how these companies, especially with Medicare Advantage plans, leave patients without treatments, without comfort measures, and without dignity. We need to change the system these companies operate in and use against people with CRPS to deny treatment. This convention was teaching the tools to do just that.
The final day was organized chaos in the very best of ways. First, we loaded 20 buses, with bus drivers who had no idea where they were going to drive to. All they knew was that over 900 of my closest friends were going to flash mob protests in specific locations around the DC area. When we acted on healthcare, we protested outside of the offices of the very lobbyists who diminish our medical care. They lobby for less responsibility for health insurance companies, giving their corporate stockholders billions in profit. We wanted to put them on notice. We are no longer going to stand by while people suffer and die without care readily available at most hospitals, but inaccessible because they can’t afford to buy in.
I’ve been able to share our stories of losing our homes and struggling to afford care and food. So many of us have become medically poor in large part due to so-called “medical” insurance companies, which would rather we die off than pay for us. We are so very “expensive” to keep alive.
Being on the streets of Washington DC surrounded by people chanting and
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