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.

Bury My Heart at Standing Rock

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images from North Country Public Radio

When I heard the news, I cried.

After a year of peaceful protest, millions of supporters, veterans providing protection, celebrities raising awarenes, and Native Tribes from all over the world joining together to fight for clean water, the oil company won. The North Dakota Access Pipeline is being built as I write this and there isn’t a damn thing we can do about it.

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Image from Democracy Now

Does money always win?

When I saw the police rolling in on miliatary style troop carriers to surround the Oceti Sakowin camp, complete with riot gear and assault rifles, I cried. How many times in our history have Native People faced this exact situation?

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Image from Voice of America

All the People wanted was clean water. That’s it. They didn’t want to annex the land back to the reservation or build a casino or anything more than a guarantee that they and their grandchildren would have clean water to drink. Clean water. One of the basic requirements of survival.

And now there’s no guarantee they’ll have clean water next year.

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Image from Native News Online

I feel powerless, angry and sad. I sent money to help the Water Protectors buy supplies for winter and then more money to hire lawyers. Thousands of people did the same. But none of us have enough power or wealth to fight oil companies and protect clean water.

Then I saw this: https://twitter.com/the_orangeidiot/status/834590610644402177  This the final message from Raymond Kingfisher, leader of the Cheyenne People and of Oceti Sacowin Camp. With tears in his eyes and a voice filled with emotion, he led the final prayers and thanked everyone for their support. He also promised that the fight wasn’t over.

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Image from WhiteWolfPack.com

This powerful video recorded on the last day of the protest shook me. If these people can walk away peacefully and proclaim the battle isn’t over, then so can I. If they can face that stark grief but still have hope, then so can I.

I will fight for people with disabilities, for equality, for compassion, for freedom of the press and of speech. I will fight for healthcare and education. And yes, for clean water.

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Image from CNN

I will fight for the welfare of future generations, just as the tribes at Standing Rock did.

Here is another powerful report from the last days of  Oceti Sacowin Camp from Intercept, by Jihan Hafiz: https://theintercept.com/2017/02/25/video-a-closing-prayer-for-standing-rocks-oceti-sakowin/

And here is how you can help the battle:https://medium.com/@ShaunKing/please-support-these-5-standing-rock-legal-defense-funds-to-stop-the-dakota-access-pipeline-754be4674ec2#.b6nzwtxnh  (thank you Shaun King for putting this list together)

How it felt to be at The Women’s March on Washington

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I’ve been trying to write something profound about how it felt to be at the Women’s March on Washington on January 21st but the best I can come up with is…

Wow….

Seriously, if the word “wow” means mind blowing and life altering.

I met my friend Jennifer, another mom of a daughter with a serious medical condition, in New Jersey. She and I then travelled by charter bus sponsored by the Unitarian Church to Washington DC. The first time I said “wow” was at a rest stop in Delaware. There were hundreds of busses packed with thousands of excited women. We were all going to Washington DC that cold, foggy morning. The weather wouldn’t keep us home.

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In Washington, the bus crept into the stadium parking lot. After parking, we joined the long line of women, men and some children in pink pussy hats, carrying signs and talking excitedly. The security person shouted that the Metro was overwhelmed, but if we wanted to catch a ride, turn left and wait about an hour. “Or walk two miles that way.” Jennifer and I chose to walk. Thousands of us walked, filling the sidewalks and roads with cheerful protest songs. The march had begun and we weren’t at the event yet.

 

When we reached the Capitol building we stood on the steps and looked across the Capitol Mall, stunned by the hundreds of thousands of people we saw. It was a milling sea of pink capped people. Slowly we walked into the crowd, unsure of what we’d find. There were so many angry, frustrated, mobilized people, but instead of rioting or breaking windows, people were holding signs, singing songs, and talking to each other. A woman stood on the edge of the reflection pool, holding up a sign and described her sign as if she was Donald Trump. “My sign is soo huuuuuge.” “This the greatest sign of all time. I promise. It’s great.” “This sign will make America great again.” Everyone laughed and cheered.

img_4682We We pushed on, trying to reach the main stage where the speakers were, determined to catch a glimpse of Angela Davis. As we got closer to 3rd and Independence, people stopped moving and we were surrounded, shoulder to shoulder, pressed forward and then back by the waves of the crowd. No more room at the stage area. The larger than expected crowd of women had maxed designated space and spilled out into the surrounding roads.

Managing to turn around, we struggled like eels fighting up stream and made it to the line for the porta-potties. Might as well stand in line for 30 minutes; by the time it’s our turn to pee we’ll need to go. People chatted and laughed at signs or discussed politics. Occasionally a cheer would rise from the stage area and then spread outward to our line, passing by in a wave of sound. A famous person would walk through a cordoned off security passage. We caught a glimpse of Drew Kerry’s neck. More cheers passed through and onward and we wondered who was speaking.

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After using the porta-potties, Jennifer and I decided to try and work around the edge of the crowd to where the march was to officially start. Only problem: there was no edge to the crowd! We thought we found it but instead of widening, the pathway narrowed and we were squeezed with a thousand others onto a sidewalk between cement barriers. The crowd stopped. No where to go. We had to wait for the crowd to move as one before we could escape. But rather than feeling anxious, I was calm. The crowd stayed calm. People were impatient, but not enough people became agitated to cause any problems. One woman and her friends forced their way through the crowd with a force so strong she spun me, which then spun Jennifer and then the woman behind us, as if we were all attached to cogs!  Instead of getting mad, we three laughed. I glanced to the other side and realized I was pressed against a movie star. She and I chatted, but I didn’t  break her cover. On this day, we were all just women.

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At last the crowd was allowed to move and the march began! Jennifer and I unfolded our banner, a pink blanket with “Respect Young Women with Disabilities” embossed on it, as well as the names of young women we were representing. My daughter’s name was next to Jennifer’s daughter’s name, and next to those names were the names of daughters of friends. So many young women who are under threat by the Trump presidency. We walked in the street and chanted with others. We stood beside a teacher in front of the Department of Education Building and held up a sign that said, “Protect Our Schools.” Three teachers fighting for education. I’m sure there were thousands of teachers there that day.

The march lasted two blocks. As the marchers rounded a corner we crashed into another crowd of people being pushed back from the stage area. Jennifer and I realized we had to get back to the other side of the crowd so we could catch our shuttle bus on time, but how? We dove in and wiggled up stream again, but were tossed back over and over by the force of people. Finally we found a way through by squeezing behind food trucks and stepping over boxes. It took 45 minutes to travel one block. We were exhausted and still had to walk two miles to the bus parking lot.

Sitting on a curb to rest, we watched four young women take turns snapping pictures of each other. Jennifer got up and asked if they wanted a group photo. The women smiled and said thank you, then posed with their signs pronouncing, “Black Lives Matter.” I wasn’t tired any more. Their excitement and energy filled me with joy. These young women were probably in their early twenties and were thrilled to be a part of history. They believed down to their bones change could happen. My 50 year old jaded self wanted to cry, because in that moment, I knew how they felt.

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We rested again in Lincoln park after walking a mile and watched thousands of protestors walk by, heading back to their shuttle bus just as we were. Everyone was so happy. Tired, but inspired! The police were still smiling at the end of a long day and I realized they had been kind and respectful all day. I never felt threatened. The locals watched us walk by their homes and waved and cheered, as thrilled by our protest as we were.

On the bus, everyone slept, worn out from such an epic day. I now know what that word means too. Epic. A part of history. Something that has changed me. Reframed my way of looking at the world. And all I can say is…

Wow.

Why I March

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I am packing for my trip to Washington DC.  I have warm clothes, a good coat, comfortable boots, and a sign that says “Respect Young Women with Disabilities.” I’m meeting another mom of a special needs child and together we will join The Women’s March on Washington on January 21st.

Why am I marching?

Because our daughters, and thousands of other children and adults with disabilities, need health care.

Because all daughters deserve respect, especially from our elected officials, and no one has the right to grab or molest them.

Because Betsy DeVos, the nominee for Education Secretary, doesn’t know what IDEA is or why it is important.

Because Jeff Sessions is a known racist but will be the Attorney General.

Because we are all immigrants and the children of immigrants. Immigrants and slaves built this country and immigrants sustain it. The only people who aren’t immigrants are Native Americans.

Because religious intolerance is anti-American.

Because people I love are Gay, Lesbian and Transgender.

Because climate change is real and if something isn’t done to stop the damage to our planet our grandchildren will suffer.

Because I am a rape survivor.

Because Mr. Trump has repeatedly shown his disdain of women and people with disabilities.

I walk for those who can’t, or who are unable to travel to Washington DC. It is my duty as a patriot to stand against injustice and fight for those unable to fight for themselves.

I am marching against hate.

How to be Kind.

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(image from http://madison.citymomsblog.com/kindness/)

 

Someone said, “You’re a better person than I am,” when I told him about my 100 days of kindness challenge. He said he couldn’t imagine just ignoring all the hatred going around. But that’s not what the challenge is about. Staying silent when you see injustice is not being kind. Speak up. Speak out. Protest. Fight. But do it in a way that shows your strength and integrity.The challenge is to not feed the anger and hatred.

How?

No name calling. If someone says something you disagree with, or you find offensive, tell them. But don’t stoop to calling them stupid or idiot or something worse. If they say something bad about you, tell them to stop. If they don’t, ignore them. People who have no better argument than calling you a “libtard” aren’t worth your energy.

Practice empathy. Take two minutes while you’re waiting in line to imagine what it must feel like to be the girl bagging up your groceries. Or how hard it must be for the person using a wheel chair to get all her shopping done. Instead of zoning out on your phone, look at the people around you. Everyone is struggling, not just you.

Hold the door for someone who’s hands are full.

Give up your seat on the bus if someone needs it.

Buy a cup of coffee for a homeless person on a cold morning.

When someone cuts you off in traffic or shoves past you in line, take a deep breath and count to ten before reacting. Take that pause to deescalate the anger and keep a clear head. Then decide how to react. Will you let it go, or confront the person? Either way you’ll be in better control of yourself.

Being kind is simple. Just remember all the lessons we were taught in elementary school about respect and bullying and follow them as an adult. It’s no mystery. Stand up for what is right. Refuse to spread hate. Be polite. Be considerate. But take no shit.

 

 

 

100 days of kindness

The first 100 days of a presidency are meaningful. The president elect announces, “In my first 100 days…” and everyone watches to see if he follows through. The first 100 days can set the tone for the rest of his term. That’s why I want to challenge everyone to 100 days of kindness.

President-elect Trump has spoken proudly about his dislike of foreigners and Muslims. He has denigrated women and mocked people with disabilities. His tone has made it okay for white supremacists and misogynists to harass people of color and women. Even people who don’t think of themselves as racist now believe it’s fine to tell racists jokes in public. Lashing out at your neighbor is allowed.

But I believe we can set a new tone simply by being as vocal about kindness as Trump is about hate. Trump has embraced social media as his platform of intolerance. We need to take it away and turn it into a platform of kindness.All you have to do is report kindness on social media with the hash tag #100daysofkindness. Share a kind word with the world. Take a picture of an act of kindness and post it. Not to show off how “good” you are, but to drown out some of the hate speech filling the internet. This isn’t about making you look better to your friends, it’s about spreading generosity and compassion.

You don’t have to share anything on social media, though. Just commit to being especially kind to others for the first 100 days of the Trump presidency. If thousands of people did that, imagine what could be achieved. While Trump continues to insult and denigrate, we could completely ignore him simply by being kind to a stranger. Go ahead and bellow, Mr. Trump. No one is listening.

#100daysofkindness. Imagine the possibilities

Dear Trump supporters, I understand why you voted for him, but can you understand why I’m angry?

Dear Trump supporters,

I understand why you voted for Trump. I live in a rural area and work in one of the poorest counties in California, a county with no jobs, substandard housing and dirt roads. This is the kind of place Obama’s promises never reached. The people here are angry, and wanted to send a clear, loud message to Washington DC.

I understand, but can you try to understand why I’m angry?

My daughter has severe disabilities and is one of those people Trump mocked while campaigning. She is a woman who depends on government services for her survival. She lives with me and I depend on services to take care of her. Without the support of Social Security, MediCare and In Home Support Services, I would be forced to put my child in an institution. I thank my government every day for the help my family receives. Trump wants to take that help away.

My husband is a cancer survivor. “Obamacare” saved him and our family. Without subsidized health care and the changes in health care law, he probably would have died and I know our family would be bankrupt. So again, thank you government. I know it is not a perfect plan, but it saved my family. Trump wants to take that away too.

I am a rape survivor. Many women have accused Trump of sexual assault and rape. He brags about it, and now, a sexual predator will be president. What message does that send to women in our country? Our voices and our bodies don’t matter. Men can abuse us and we are powerless to stop it.

Trump is racist. He openly hates Mexicans and Muslims. He thinks black people should shut up about racist cops. And his win of the presidency sends a message to other racists that it’s okay to write swastikas on walls and beat up immigrants.

Many of the people I love are gay, lesbian and transgender. Will they now be denied legal protection to work and live peacefully? Will families be destroyed?

Again, I understand why you voted for Trump, and I know a lot of you aren’t racist or misogynist. But in voting for him, you told people who are racist and misogynist that it’s okay.

You can be the biggest bigot in town and  people will still respect you. Hell, they might even elect you president.