Lobbying for Healthcare in a bizarre world called Congress.

My plane landed in Washington DC at 5:30 AM. I’d never taken a “red eye” before and I was surprised I’d managed to get a little sleep on the flight from San Francisco. Grabbing my suitcase I found my shuttle and rode the 20 minutes to my hotel. In the lobby, the clerk said cheerfully, “Good morning. Checking in?”

I held up a finger. “Just a minute. Where’s the bathroom?” She pointed down the hall to my left.

Quickly I changed out of my yoga pants and tshirt and put on my professional looking dress, one I had chosen because it didn’t wrinkle. I brushed my teeth, put on earrings, slippped into heels, and added lipstick. After leaving my overstuffed suitcase with the front desk I joined the group of people heading to Congress to fight for health care for people with Mitochondrial Disease. It was 7 AM and I needed coffee bad. But I was ready.

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This was day one of the UMDF conference. I joined my assigned group, a doctor and a mom from California and a man who had LHON. We were to meet with 5 of our political representatives or their staff,  in the Senate and the House. At first we weren’t sure what to do, but once we got to Senator Feinstein’s office our group found its voice. The doctor in our group explained about Mitochondrial disease and the research efforts of the National Institute of Health. The mom talked about supplements and the need for insurance companies to provide them. The man with LHON talked about being affected with a disease. And I talked about the day-to-day-caring for my child and how important MediCare was for her life. The staffer took notes and asked numerous questions. We four felt like we’d made an impact.

The next staffer was either new or simply overwhelmed. He took a few notes, but mostly looked like he had no idea what was happening. We were all crammed into the reception room of Kamala Harris’s offices and people came and went and chatted over our heads as we tried to give our presentation. I couldn’t blame the poor guy; it was Thursday and all week people had been yelling about the GOP Healthcare Bill. Everyone was desperate to go home for the 4th of July break and I suspect at 10 am he’d already worked 5 hours.

From the Senate building we walked across the Capital grounds toward The House of Representatives Building We had to take the long way because the Capital building was blocked off by armed military police. Our local escort shrugged it off;  road closures and the military on alert was just an ordinary day in Washington DC.

At the Offices of the House of Representatives we gave the same presentation, this time directly to Judy Chu. She was extremely kind and appeared interested in what we had to say. Here was a real pro, someone who could listen to people talking health care during a week the words “health care” made people scream. At the end of our meeting, I thanked her.

“I really appreciate how hard you and other Democrats are fighting for people with disabilities like my daughter.”

She shook my hand and smiled. I wonder if politicians get many thank you’s?

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Then we met with a Republican staffer from New York who was obviously fed up with the words “health care” and gave us 4 minutes of his time. By then our group had split up. I met my Representative, Jared Huffman, on my own. Our meeting time had been changed but I didn’t know, so I sat with a staffer and talked about my daughter. By then it was 3:00 and my brain was so fried I couldn’t remember my part of the presentation, let alone how to explain Mitochondrial disease and the National Institute of Health. I’d walked up and down and around the halls so many times I lost track of which building I was in. But this staffer sat at the table with me, smiled warmly and asked questions. And then Jared Huffman himself stepped out of a meeting for 2 minutes to shake my hand. I wanted to hug him, but instead, I thanked him.

Walking around those buildings, I passed office after office of congresspeople from every state. Climbing the stairs, I detected that the marble steps closest to the hand rail were slightly grooved; thousands of footsteps over hundreds of years had slowly worn down the lip of each step. Every conversation crashed into the next, echoing down the stone halls. There wasn’t a moment of quiet, not even inside the offices where we met people who at least appeared to want to help. Once, I used the wrong elevator, accidentally hopping on the one reserved for elected officials. An older gentlemen in a nice suit smiled but didn’t reprimand me. I wonder which state he represents?

By the end of the day, I was worn out, confused, and ready to finally check into my hotel room for a shower. But I was also exhilarated. Here I was, actually talking to people in Congress about healthcare the same week Congress was debating healthcare. I shook the hands of people fighting for my daughter. I don’t know how they do it, day in and day out.

And I have a better understanding of our democracy, at least the ideal of democracy. A thriving democracy is more than just voting every few years; it requires participation. It needs us to talk and listen and debate and argue. We need to interact with our Senators and Representatives and make sure they hear us. Otherwise the only people they’ll hear are the people with the checkbook.

I love Washington DC. This makes the second time I’ve been there since January and I have a feeling I’ll be back.

Trying to change the world is not a solo endeavor.

I believe that one person can make positive changes in the world. My heroes are Martin Luther King Jr, Dr. Hawa Abdi, Cesar Chavez, and Margaret Sanger. All four fought for the rights of others despite impossible odds and succeeded. And so, with their example in my mind, I tried to raise money to pay the bus fare for people with disabilities. Dial-A-Ride is expensive, especially if you live out of town, and in a rural area like Mendocino County, the bus is limited. How does a person with a disability get to town for shopping or a doctor’s appointment or to visit friends, if they can’t drive?

How hard could it be? It’s not like I’m trying to provide medical care in Somalia.

With the support of Burners Without Borders, a volunteer organization that helps people create change in their communities, I made a fundraising plan and called the Mendocino County Transit Authority (MTA). No one called back. I called again. I emailed. I waited. No response. Fine! I guess they don’t want money. Too bad, I’ll try a different tact. After making a list of local non-profits who help people with disabilities, I contacted each one. No one called back. Hmmm…. weird. What am I doing wrong? I called Burners Without Borders for help and they advised me to go ahead and fundraise and not worry about getting MTA support. Just show up with a check and they’ll take the money.

So I started planning a fundraising event and quickly had a panic attack.

If I don’t find a way to help people with disabilities get to the grocery store, who will? Would Margaret Sanger give up because no one returned her phone call? No! She was beaten and thrown in jail, but never gave up. She also had a group of people helping her.

Oh… right… even heroes need help. And I am not a hero. I’m just a woman in a rural town who sees a problem and wants to solve it.

Last year I tried to get the City of Ukiah to fix the Accessible Pedestrian Signals (APS) at intersections so people with vision impairments could cross the street safely. I met with a City Councilwoman and contacted the Department of Transportation. I also spoke with the City team working on the new traffic plan. They said they would add me to their contact list so I could attend their meetings. It never happened.

Again, I banged my head against a brick wall trying to solve a problem no one else seemed worried about.

If I had more time, I could attack all these problems effecting people with disabilities in my town: no transportation, broken pedestrian signals, crumbling sidewalks, lack of curb cuts, unsafe street crossings (near the hospital for goodness sake!). But I can’t do it alone; not even Martin Luther King Jr was alone. I have to accept the fact that just because I see a problem doesn’t mean it’s mine to solve. I really tried to make progress, but the brick walls I hit are stronger than one person can tear down. So I’m passing the baton to the next person.

You?

I hope someone carries it.