The tarnished tiara

A little like the tarnished halo I envision my son wearing.

Today is my 65th birthday. It would have been my son’s 43rd.

This is the 10th birthday I have celebrated without him. I thought about that as I lay in bed at 8:30 this morning, the time he entered the world 43 years ago.

He enriched not just my life, but the lives of pretty much everyone who knew him. He was smart, wickedly funny and kind. He was also a self-proclaimed jackass, as were his two best friends, James and Christian. The three of them together created a shitstorm of hilarity — unless, of course, jackass was not your thing.

Michael spoke his first word at 7 months. It wasn’t Mama; it was mouse. See, he had this little squeaky mouse and he dropped it. I picked it up and gave it back to him and he said, “Mouse.” Clear as day.

I thought he couldn’t actually be saying mouse because he was seven months old, but he dropped it again and again, and each time I handed it back, he said it again.

He pretty much didn’t stop talking after that. He drove his teachers nuts. He distracted everyone else in the classroom. But, in his defense, he was bored. The teachers who allowed him to read books years ahead of the abilities of other kids his age were the ones who got a little peace.

Mike, age 6.

When he was in the fourth grade, a teacher took away the collected works of Edgar Allen Poe because she thought it would give him nightmares. I had to call her and try to explain his tastes in literature to get the book back.

I got calls at least once a week about how he was being disruptive in class, and each time, the teacher had insisted he just do the work his classmates were doing. Well, if he finished the assignment in five minutes and the rest of the class took 30 minutes, that’s 25 minutes for him to be bored and trying to find ways to amuse himself.

As I said, the teachers who found him something to do were the ones who got a little peace and quiet.

When he was in fifth grade, they forced me to put him on Ritalin. He hated it, I was against it, but the school district threatened to call child protective services and report me for being neglectful. I was afraid they’d try to take him from me, so I allowed it.

A couple of months later, Michael came to me and said he hated the medication, that it make him feel like “not-me.” So we made a deal: He would contain himself. He would be conscious of his impulses and not let the teacher know he hadn’t taken his medication, and we would see how long he could fool them. It was three months, and in that time, an attorney friend of mine said she would fight the district for me if they tried to force the medication on us again.

When the teacher called and said, “Someone forgot his meds this morning,” I was able to tell her it had been three months since he had taken a pill and we would not allow them to force us into medicating him again.

The solution, of course, was to allow him to read in class when others were finishing their work, and he read science fiction novels.

But in his adolescence, he turned to drugs and alcohol. He said years later that the Ritalin had been the gateway drug, the thing that turned him onto mind-altering substances. I don’t know if that’s true, but he believed it.

He sobered up when he was 22, and he spent the remainder of his life helping other people get and stay sober. He saved lives, but there was no one with the ability to do it who would move to save his life when he couldn’t buy insurance at any price.

His doctor wrote in his medical record, “Patient needs a colonoscopy but can’t afford it.”

Later, when the symptoms started, he went to the emergency room three times. But the ER only has to stabilize you, and he left with the wrong diagnosis and the wrong medications three times. A doctor finally agreed to do a colonoscopy, but he didn’t tell Mike that his colon was entirely blocked. He just sent him home and wrote in the record, “couldn’t complete procedure. Next time use peds scope.”

I couldn’t get an apology for that from Memorial Health in Savannah, where the doctor is on staff. An apology was “too much to ask,” even when I offered to sign a written promise not to sue.

My son was a remarkable human being. Through three years of pain and suffering, he never lost his sense of humor — and he maintained his sobriety.

Mike had an incredibly foul mouth, and my penchant for dropping the F-bomb likely is just him channeling through me. (That’s my excuse and I’m sticking by it.)

I understand his wise words are still quoted in the rooms in Savannah and in the Triad here in North Carolina. He had the wisdom of a very old soul.

I was told earlier this year that he’s very, very proud of me. That came from a woman who introduced herself to me with the words, “You’re going to think I’m crazy, but I have a message from your son.” I thanked her, and as I started to walk away, she added, “One more thing. Did you know he stands behind you when you speak, and he’s smiling?”

Then I knew she wasn’t crazy because I feel his presence sometimes. And I know he’s smiling because he loved nothing more than being the center of attention.

Before he died, he asked what I planned to do with the Dead Kid Card (he had spent three years playing the Cancer Card). I told him I planned to work for universal access to care because, as my T-shirt says, “Everyone deserves health care. Everyone.”

I have been arrested four times — so far — in this work. I don’t go into legislative office buildings to get arrested; I go to plead for the lives of every human being who can’t get access to care. I go, hoping against hope, that I can change one mind, two minds … enough minds to get a health care system that doesn’t reject human beings because they can’t pay.

This work is my life now. I stand for the people Jesus called “the least of these.” You can arrest me, make me do community service (which I do anyway), throw me in jail … but unless you kill me the way this system took the life of my precious son, I will keep on doing what I do with every ounce of strength, every breath and every beat of the heart left to me.

Happy birthday to me, and to Mike. The tarnished tiara is in memory of you, my sweet boy, as is all the work I do.

 

While you were distracted, 9 million children lost access to health care

Nearly 9 million children in low-income families were enrolled in CHIP — until the Republicans, who control Congress, let it expire.

It’s not enough that I lost a son to lack of access to health care.

It’s not enough that my only surviving child has no insurance.

Now the Republicans in Congress have stripped my grandson and my great-granddaughter of their access to care.

At midnight on Sept. 30, Congress — which is controlled by Republicans —  allowed the Children’s Health Insurance Program, or CHIP, to expire.

In addition, funding for community health centers expired at the same time.

So, Republicans, tell me again how you’re pro-life because you’re against a woman’s right to not bring a child into a world where no one cares if it dies in infancy or childhood, simply because you believe their parents are your moral inferiors because they’re poor and “just want a handout.”

Oh, and you’re also against paying people a living wage in exchange for a week’s work, making it nearly impossible for anyone to escape poverty.

You support keeping people in poverty and then criticizing them for being poor. Then you yank their children’s health care.

There is no defense for this. None.

This is terrorism. It is murder.

I have no problem offering a handout to children like my grandson and my great-granddaughter. I can’t understand why Republicans would have a problem with it.

I have no problem with the government funding clinics that care for people like my son, who works two part-time jobs as he enters his fourth year drug-free.

No one in my family has ever asked for a handout. We simply want what is available to people in every other industrialized nation on earth — health care.

While we’re on the subject of health care, let’s talk about the “failure” of the Affordable Care Act, which, by the way, would have saved my son’s life.

A record number of Americans have health insurance now, and while some of these policies are pretty crappy, they still are better than nothing.

Before the ACA, some 45,000 people died every single year from lack of access to care — that’s one every 12 minutes. Today, it’s between 15,000 and 20,000, the majority of those being in states that have refused to expand Medicaid to cover the working poor — the very people for whom they say they have sympathy.

My granddaughter was in high school when her daughter was born. She finished high school and now works and is in nursing school. She’s exhausted most of the time, but she’s determined to make it.

Tell me again how she and her baby deserve to die. I’d just love to hear your rationalization.

My grandson is in high school. He tells me he wants to be a teacher. He loves photography and he works at a restaurant so he can afford new photography equipment and to put gas in the car so he can go to the nature preserve and shoot birds and alligators. When he’s not driving, he’ll try to convince whoever is to slam on the brakes when he sees a good photo. His CHIP would have expired in March anyway, so no big deal if he gets sick a few months early, right?

And my great-granddaughter, who’s 4 1/2, well, she doesn’t even have a job. Perhaps she should learn to pull her own weight, right? I mean, where does that lazy little thing get off wanting to play when she could be out there helping to build roads or working at Home Depot?

No, wait — Home Depot doesn’t hire many full-time people anymore because it would have to offer them health insurance. Can’t have people getting health insurance when it might cut into profits, now, can we?

We’re flying flags at half-staff today because a domestic terrorist killed 20 people and injured 400. And while that’s a tragedy, I think 9 million children without access to care and millions more people losing access because their local clinic closed, is far, far worse.

When we can allow children to die from lack of access to care, we surely have lost our collective soul.

We are a despicable nation and we deserve to fall.

 

 

 

 

 

An unjust system treats people arbitrarily

Most of the 31 arrested on July 25 for disrupting the Senate. One person couldn’t get to Washington for our court date and three more were getting invasive drug testing.

 

I have learned first-hand how arbitrary and cruel our “justice” system can be.

Thirty-one of us were arrested July 25 for disrupting the Senate by chanting “Kill the bill!” as the Senate voted to open debate on a bill that would strip access to health care from 33 million Americans.

We were taken to a warehouse to be processed, and 29 of us were given an appearance date for court and released. Two of our number were sent to jail overnight. It appears they were picked at random because all of our charges were the same. Two of us, Jennifer “Jeff” Ginsburg and I, had charges pending from an arrest in May at the North Carolina General Assembly Building, but Jeff was jailed and I was released.

Later, 29 of us were offered a deferred prosecution agreement that requires four months arrest-free, a four-month ban on entering the US Capitol Building and 32 hours of community service. Another was offered a deferred sentencing agreement, which requires a guilty plea that will be set aside after 48 hours of community service and six months arrest-free and a six-month ban on entering the Capitol Building.

I alone was offered nothing in advance.

I had no idea what that meant and the prosecutor would not explain it to my attorney, so I went to court not knowing what they had planned for me. I was a mess.

Was I going to be thrown in jail?

Was I going to be fined some large amount of money that I didn’t have with me and couldn’t pay on the spot?

Why was I singled out?

Because they can, that’s why.

When we got to the courtroom, the prosecutor offered my attorney the deferred sentencing deal for me.

It seems they were just playing with my head. Whether that was their intention or not, it it worked. I was really scared.

I made arrangements with Jeff that she would call my husband and get my car from the Metro station where I had parked. She would take my purse and my crocheting. Organizers of the protest, Rev. Rob Stephens and Rev. Robin Tanner, promised I would not be abandoned and as we entered the courtroom, everyone surrounded me and promised their support.

When the prosecutor read the description of what I had done, she claimed I had been in the Gallery. The judge asked whether the account was accurate.

“No, sir, it is not,” I said. “I had been told I could bring in a photo of my late son. It was a 5×7, unframed. A few minutes later, I was escorted from the gallery for having a poster. When the chanting began, I was in the hall. I didn’t begin chanting until people began being brought out. That’s when I joined them.”

The judge was clearly irritated, and I thought for a moment he was going to dismiss the charges, but the prosecutor convinced him that because the door was open I was just as guilty as anyone else.

The judge offered to let me plead not guilty and go to trial, but I chose to accept the deal. Before we left, though, I added one more thing.

“Your Honor, I need to tell you that that 5×7 photo is all I have left of my son. He died from lack of access to care in 2008. The Affordable Care Act would have saved his life.”

That’s right, I played the Dead Kid Card and I’m glad the prosecutor got to hear why I wanted to carry that “poster.”

But I am left with the memory of how frightened I was, about how the system is allowed to be cruel and arbitrary. And if I was as frightened as I was, even with all the support I had, I can only imagine how a young person of color feels when arrested alone.

The police treated us all with respect, except for the ones who spent the night in jail. I’m told their demeanor changed as soon as the decision came down to transport those two people to jail for the night.

None of us was told why we were singled out for more severe treatment, leaving me to believe that it was done to intimidate all of us and make us question whether we’ll be the one to spend time in jail or not offered the same agreement as the others if we do civil disobedience again.

In fact, we went into our civil disobedience thinking we would get “post-and-forfeit,” fined $50 and released. We were a little surprised at the charges and at having to come back for court. We were told this was a possibility, so we went in with our eyes open, but we did not expect to have one or two people singled out for more serious treatment each step of the way.

I have learned a lesson here: No one is safe in our arbitrary “justice” system. We need reform. We need it now.

This has not been an entirely negative experience. I have made new friends, new allies, and they have enriched my life.

And as scared as I was, my resolve is the same as ever. I will continue to put my body on the line to protect people’s access to safe and affordable health care. I will not go away.

I will avoid arrest for the next six months, I will do my community service. But I will never stop working for access to health care for every human being. I’ve already endured the loss of my precious son. Nothing can be worse than that.

 

 

Playing the ‘Dead Kid Card’

Hours after my third arrest, I spoke at a press conference about why I needed to speak to legislative leaders about access to health care.

The entire time my son was sick — just over three years — he played the Cancer Card.

If we asked him to do something, he whined, “But I have cancer!”

The expected reply from friends and family was, “Cancer, schmancer.”

He did this in public, at grocery store checkouts and anywhere it might get attention.

He loved attention.

But a week before he died, he sat me down for a talk. It started with, “You know, you’re being dealt an untrumpable card.”

“Excuse me?”

“The Dead Kid Card, Mom. You’re being dealt the Dead Kid Card.”

“I want nothing to do with that.”

“Too late. It’s being dealt. Now, what are you going to do with it?”

I didn’t want to talk about this. In fact, I was laboring under the misguided impression that my heart would stop when his did. I wouldn’t have to deal with the dead kid card because I was going with him.

But what if my heart kept beating?

I panicked. I couldn’t face life after he died, and he was making me think about it.

“OK, I’m going to work to make sure every human being has access to the care they need and I’m going to tell your story to further that goal.”

“That sounds good,” he said. “You have my blessing. Now, can I get a cup of coffee? I have cancer and I’m dying.” He smiled and settled back into his pillow.

Of course, my heart didn’t stop when his did. I sat there and wished it to, but it wouldn’t. So I got to work.

I tell my son’s story at every opportunity. I spent nearly 30 years telling other people’s stories as a newspaper reporter. I am a firm believer in the power of stories to explain complex policies and their effects on real people. My stories changed local and even state policies several times during my career. Now I had the most powerful story imaginable to tell — the story of how an extraordinary human being died from neglect.

If you want to say people who need health care are “just looking for a handout,” Mike’s story disproves that. He never wanted a handout and it was only his own experience that made him realize how important it is that everyone has access to care. He had been pretty much a Libertarian before that, determined to take care of his own needs — until he realized that wasn’t possible in a system like ours, where medical care is too expensive for anyone who isn’t fabulously wealthy to afford.

I started telling his story. There were those who accused me of lying, who refused to believe my son — or I — deserved any sympathy. The local Tea Party tried for more than a year to get me fired from my job as a newspaper reporter because they saw how dangerous his story was.

On the morning of my fourth arrest, I walked with interfaith clergy as we carried a cardboard coffin to protest attempts to repeal the Affordable Care Act during a rally on Capitol Hill in Washington, D.C., on July 25, 2017. RNS photo by Madeleine Buckley

I left my job — I volunteered to be laid off — 16 months after Mike died so that I could tell his story in public and demand something be done about our broken health care system. President Obama was working on health care and I wanted to be in that fight. I had been under a great deal of pressure to include the lies of the Right in my stories, unchallenged, as though their unsupported beliefs should carry as much weight as the truth.

I told Mike’s story across the state and in Washington. I was on national TV and speaking at large rallies, and I knew Mike was with me.

When Howard Dean took his photo at a rally of 5,000 people and the crowd started chanting his name, I could almost hear him laughing and chanting, “Yeah, Me, Me, Me!!”

Telling the story again and again is exhausting. It’s emotionally draining and it’s painful, sometimes even physically painful.

But I do it over and over and over because I have the Dead Kid Card and I have to keep playing it. People have to know that good people die when you take away their access to health care.

This summer, after I told his story again at a political rally, a woman approached me.

“You’re going to think I’m crazy,” she said, “But I have a message from your son. He’s very, very proud of you.”

I smiled and thanked her and began to turn to walk away.

“Did you know he stand behind you while you speak?” she asked.

I turned back.

“Excuse me?”

“He’s right behind you when you speak and he’s smiling. He loves being the center of attention, doesn’t he?”

I choose to believe she’s not crazy.

I choose to believe Mike is with me, and when something stupid happens (think of a flat tire in the pouring rain), I can almost hear him laughing.

This most recent fight for health care has drained me more than any of the ones before it. These murdering thugs in Congress never cease to amaze me with their efforts to strip tens of millions of Americans of their health care.

Lately, they have tried to stop me from having Mike’s photo with me. Mark Meadows’ people tried to confiscate it when I wanted to get into his town hall. I was taken out of the Senate Gallery in Washington because I had a 5×7 photo of him (with no frame because God knows I could jump out of the gallery and slash all the Republicans’ wrists with the broken glass before anyone could stop me), which they called a “poster.”

Mike’s story is powerful. I know that, and I use it to try and make people understand that good people die horrible deaths when they’re denied care.

I play the Dead Kid Card because it is the most powerful card in my deck, and I will not stop until every person in this country has access to affordable, quality health care.

No one deserves to die the way my son did. No one.

 

 

My letter to Sen. Lindsey Graham about health care

Sen. Lindsey Graham (R-SC). Photo by Politico

 

When I was in Washington, after I had been released from jail. I met Lindsey Graham in a crosswalk as I was going to the Metro.

I introduced myself and showed him a photo of my son. We spoke briefly and it was very cordial, and as we parted, I begged him not to vote to strip away access to health care for 33 million people.

Last week, he introduced a bill to do just that.

Here’s the letter I faxed to him this morning:

Senator Graham:

You might remember me. I stopped you in a crosswalk in Washington a few weeks ago and introduced myself. I told you I’m from North Carolina, and you smiled and called me your neighbor.

I showed you a photo of my beloved son, who died because he couldn’t get access to health care and ended our conversation with, “I beg you, sir, please don’t vote to take away access to health care from 33 million Americans,” and you said you would consider it. You actually went back into the Senate Chamber and voted against that first bill.

This is my son, Mike Danforth. I miss him every moment of every day.

Real people die when they lose access to care. Each year before the Affordable Care Act became law, 45,000 Americans died prematurely because of lack of access to health care. That’s one every 12 minutes.

At 4:48 p.m. on April 1, 2008, it was my precious son whose heart stopped beating. I would rather it had been me, but I didn’t have that choice because I couldn’t make any insurance company sell him coverage and without that coverage, I couldn’t get any doctor to give him the care he needed. Yes, he went to the emergency room, but as I’m sure you know, they were only required to stabilize him, so instead of a diagnosis and treatment for the cancer that by that time was blocking his colon, he got a laxative and a bill.

My son worked 30 hours a week in a restaurant and attended college full-time, majoring in history with a minor in philosophy. He was also a volunteer, helping people get and stay sober. With all this, he still maintained a 3.75 GPA.

I know you like to call yourself pro-life, so I’ll tell you that when I was first pregnant with him, I had a rare virus that my doctor said could cause birth defects. She advised me to have an abortion and try again, but that child was real to me already. I chose to continue the pregnancy, and I never regretted that decision because he was such a remarkable human being.

My son was brilliant, kind and wickedly funny. His work saved lives. I know this because so many people told me their stories after he died. One mother came up and hugged me and said, “Had it not been for Mike, my son would have died. Mike literally picked him up out of the gutter and saved his life.”

Mike needed a colonoscopy every year, but no doctor in Savannah, Ga., would do one for him, even though he had a one-in-four chance of developing an aggressive form of colon cancer. It would have cost us about $60,000 over the course of his lifetime to do the screenings and remove any polyps, but we said no, and instead shelled out nearly $1 million for his care and he died anyway. So don’t tell me we can’t afford it because I know it’s a lot cheaper to take care of people before they get really sick.

I tell you this about my son because you appear to believe that people who can’t get a job with insurance coverage, or who were born with a “pre-existing condition” are morally inferior. They are not lazy. They are not worthless. They are not looking for a handout, and even if they were, they don’t deserve to suffer and die the way my son did. No one does.

I have been doing health care advocacy work since my son died and I haven’t met a single person who doesn’t deserve health care. Not one, although I have questioned whether the selfish, greedy people responsible for my son’s death deserve anything.

You see, I consider the people who withheld care from my son to be murderers. Their inaction killed my son as surely as if they had put a bullet through his heart. Actually, putting a bullet through his heart would have been more humane than the three years of suffering he endured.

To be eligible for Medicaid, my son had to leave his wife because she had a late-model car and some student loan money for tuition in the bank. My son applied for disability and waited 37 months for approval. He was dead nine days before his first check came. He applied for food stamps, and with no income and no wife he was offered $10 a month. He refused the offer.

If so many people hadn’t loved him so and been willing to care for him, my son would have died on the street.

Life without my son borders on the unbearable every moment of every day. All I can do is beg for you and your colleagues to care enough about human life to shore up the Affordable Care Act, or to pass Medicare for all.

Consider the words of Jesus (I believe you consider yourself to be a follower of Jesus) in Matthew 25 (paraphrased here for modern times):

“For I was hungry and you voted to cut Food Stamps, Meals on Wheels and school lunches.

“I was thirsty and you voted to allow polluters to poison my water.

“I was sick and you voted to strip me of my access to health care.

“I was in prison and you allowed corporations to profit off of my misery.

“I was naked and you told me to get a job, but you wouldn’t ensure I could make enough to buy clothes.

“Whatsoever you did unto the least of these, you did also unto me.”

I beg you to think about this and then withdraw the bill, or at least your support for it.

Oh, and the day I met you I had just been released from jail for disrupting the Senate. I was one of the people who chanted, “Kill the bill!”

I had been hauled from the gallery a few minutes before the chanting began because in my hand was a 5×7 photo of my son – the same one I showed you in the crosswalk. The guard called it a poster.

When the chanting began, I joined in and was arrested, along with 31 other people who are truly pro-life.

I didn’t have to join the protesters.

I could have not been arrested. I could have stayed home and been alone in my grief, but I do this in his memory and because no one should die the way my son did. No one. And I will fight with every breath left to me to make sure no one does – not even those who would take access to care away from 33 million of their fellow human beings.

Your “neighbor,”
Leslie Boyd
Candler, NC

 

 

 

Killing the Affordable Care Act with a thousand cuts

When people can’t get insurance, they die. It’s that simple.

 

If you need health insurance through the Affordable Care Act Marketplace, I can’t help you.

Something happened last night that makes it illegal for me to answer your questions and it is a deliberate attempt to take away our access to health care.

For the last four years, I have been a Navigator, a volunteer who helps people get health insurance. But as of today, I no longer can answer your questions.

We have been muzzled by funding cuts.

You see, there’s a rule that we can only work as volunteers through agencies that were funded to oversee us. That was to protect consumers from charlatans who might steer them the wrong way.

But this administration realized that if they cut the “advertising” funding (more accurately, outreach funding), agencies wouldn’t be able to pay the person who oversees the volunteers, and without that person, the volunteers wouldn’t be able to do their work. We could be silenced.

I haven’t seen this in the news yet, what with Harvey and Irma and Mueller and all.

It’s just not big enough news.

But it will be enough to keep a lot of people from getting the face-to-face help they need.

Make no mistake, this is a direct attack on the ability of some 33 million people to get health insurance, and with it, access to lifesaving care.

When Congress failed to kill the ACA, the Occupant of the White House swore he would find a way to do it, and he has decided to do it through seemingly innocuous funding cuts.

It’s no accident that the outreach budget was cut — that action muzzled thousands of volunteers who were trained to help. Don’t think the Occupant didn’t know that.

Consumers will think we didn’t need that “advertising” budget because everyone knows you can just go to www.healthcare.gov and get insurance.

But what if you hit a bump in the road? It’s easiest to get past any hurdles if you’re sitting with someone who understands the process and the law. Yes, you can call the 800 number, but what if there’s a 20-minute wait? A navigator would have answered the question then and there. It’s just another way to make the process less simple and less convenient.

I know what happens when people can’t get access to health insurance — they lose access to care, and they die. I have watched it happen. That’s why I became a Navigator.

On Tuesday, I’ll return the laptop to the agency where I volunteered. I’ll still take the training to qualify as a Navigator for 2018, but it’s not likely I’ll be able to use that training to help anyone.

By law, I can’t help you.

But let me know if you have any questions, I can point you to the answers. And if I happen to be in the room when you’re shopping for insurance, I will help you point the cursor to the right place on the screen. I can explain any jargon you have trouble with — kind of like your own personal dictionary.

We’ll call it my little act of resistance.

 

 

 

Time to renew and refresh

Setting up camp. Faith, on the left, is the youngest; Robin, on the right, is the middle sister. My brothers-in-law, Tim (Robin’s husband) and Alfred (Faith’s), are left to right on the other end of the table shelter.

 

For a couple months now, people have been advising me to take a few days away from everything.

I resisted because, well, the orange menace in the White House and Congressional Republicans trying to take health care away from 33 million Americans and all.

But then my two sisters decided to come to North Carolina for the eclipse, and they reserved campsites near the totality zone, about 40 minutes from my house. I was invited to pitch my tent on my youngest sister’s site.

The campground has no cell phone signal. The most I could do was send a text here and there, so all I could do was hang out with my sisters, go for walks and relax.

One of us went out every day for ice and news so we could be aware if a war started or something, but for the most part, we basked in the quiet.

My next-younger sister scoped out the best place for us to watch the eclipse without going into Brevard. We wound up going about 3 miles up from the campground to a small picnic area. We arrived at 7 a.m., certain the little clearing would be inundated with people before 9 a.m., but just a few people showed up — two young friends of mine, a biker from Connecticut, a woman from Swannanoa, a family from Raleigh and a young man who appeared to be almost unaware of anything around him except for the eclipse.

The sun, in total eclipse.

It was a small group and most of them were there by 9 a.m., so we got to know each other, shared lunch, joked, taught everyone how to speak with a New England accent and learned some Appalachian phrases.

No one asked me about health care. No one expected me to take the microphone and speak. No one asked me to write a few words for a letter to the editor or to a member of Congress or the state legislature.

I was just the oldest surviving Boyd sister (we lost my older sister to cancer 11 years ago), the loudmouth, ball-buster to Robin’s poetic sensibility and Faith’s quiet observance of everyone. I fear she’ll write a novel one day and we’ll all be portrayed too accurately.

For most of the trip we didn’t talk about my activism. We talked about our childhoods and our children and grandchildren, nieces and nephews.

We watched a group of families with eight or so small children and they reminded us of the group vacations our family took with the Davises and the Bainses when we were little. We had the run of the campground. We always met other children, and all the parents kept an eye on all the children.

Robin just retired and is a little unsure what lies ahead. She was trying to think about something she could do, and she came up with a project to visit all the subway stops in Boston and write poetry about what she finds. Faith’s husband will be her guide, since he’s a native of Boston.

I love the idea. She is a gifted poet.

When I sighed and said I wished I could do something like that, both sisters looked at me as though I had just said I wanted to become a short-order cook or a prison guard or something.

“You have a really important project,” they told me. “You’re working on getting people the health care they need.”

It was the first talk of who I have become since my son died. I was transported back to the present. I was reminded that I can’t take a permanent break from the work I do.

Robin’s retirement work is to wring beauty from the mundane. Faith is a devoted grandmother to two special-needs children. Me? I’m the brassy loudmouth who was created for the work I do now.

Representing, unlike my representative, and refusing to back down

Mark Meadows exemplifies everything that’s wrong with America right now.

 

I wasn’t going to go to the Mark Meadows town hall tonight.

There’s nothing he can say to convince me he’s right, and he won’t let me speak to him.

At the last town hall I went to, questions had to be written out, and we were told they would be asked in the order they were submitted. I was the second person through the door and I submitted the second question. But mine was not among the eight questions asked.

I approached Meadows afterward to ask why that had happened, but he took one look at me when I stuck out my hand to introduce myself, said, “Oh, I know who you are,” and turned his back to me.

This man is supposed to be representing the people of Western North Carolina, but he refuses to speak to anyone who might disagree with his cruel and inhumane policies.

The first attempt to pass Trumpcare in the House of Representatives wasn’t severe enough for Meadows and his “Freedom Caucus.” It didn’t take enough away from people. It still saved a few lives, after all. It had to be made more draconian before he and his sleazy band of thugs would vote for it.

I have no use for this man, but I have decided I need to show up with my son’s picture and pray that perhaps I can move him toward compassion. At least I can be there to show that not all the voters in this district are anti-life.

This fight takes its toll. I am stressed and emotional from the fight against Trumpcare. I have spent hours and hours writing to Meadows and my senators (Burr and Tillis), only to have them ignore me or send me form letters filled with lies about the Affordable Care Act.

Now I have fellow Democrats accusing me of being a “purist” and suggesting I should leave the party because I don’t want to vote for anyone who doesn’t support universal access to quality health care. Let your kid die and then tell me it isn’t imperative that we fix this now.

I’ve had little rest lately, as the radicals on the political right try to take away what little progress we have made in access to care. I was arrested in Raleigh in May because I was trying to talk to the NC Senate leader. I was arrested in Washington in July for trying to disrupt a vote to take away health care from up to 33 million people.

I’m putting my body on the line and being vilified as a “purist” for my belief that we need access to care for every human being and speaking the truth that we need candidates who will work for us on this.

I want a living wage for minimum wage. I want to see it set at $18 an hour and tied to inflation so people don’t have to work three jobs to pay their bills. If you’re making $7.25 an hour, you need that money NOW, not in five years. Only people with unacknowledged privilege think it can wait.

The establishment Democrats are exactly what mainstream Republicans were before it was taken over by right-wing radicals. I had differences with them, but could at least respect them. Since 1980, the radicals have managed to drag the entire conversation so far to the right that what once were mainstream Democratic ideals are now considered radical.

A living wage as minimum wage? Socialist! Health care for everyone? Communist!

If you think I’m wrong, just read the 1976 Democratic Platform: http://www.presidency.ucsb.edu/ws/?pid=29606.

I’ve been told I’m too divisive and I should leave the Democratic Party and go Green, which I would do if there was a chance in hell they could win against all the big money now flooding the Dems’ corporatist candidates.

So as far as being “purist” and “elitist” goes, screw that. I’m the one staying with the party and trying to make a difference.

I voted for Hillary Clinton even though she said she wouldn’t work on single-payer and she wasn’t for a big increase in the minimum wage all at once. Hoe does that make me a “purist” who should be purged from the party?

So, if you’re in agreement with Mark Meadows and think we don’t need universal access to care or a living wage for people who work 40 or more hours a week, then join his party because you aren’t a Democrat.

Democrats make room for disagreement. Democrats are able to talk things out and compromise.

If you want people who will slavishly follow the party line, join the party of Mark Meadows. They love sheep.

 

 

 

 

Thank you to the GOP members who voted no

Susan Collins of Maine and Lisa Murkowski of Alaska voted no. John McCain joined them. Photo by Getty Images.

 

John McCain had a choice. He could play politics and be the darling of the right wing, or he could do the right thing.

The future of the Affordable Care Act lay in his hands.

Thing is, this likely was to be his last hurrah.

Diagnosed with an aggressive form of brain cancer, he likely has little time left to him. I was afraid the irony might be lost on him — a politician who had fought against the ACA, getting the best medical care available to anyone and able to allow tens of millions of people to keep, or lose, lifesaving access to health care.

Would be make the connection? Would he see the importance of access to care for everyone, or would he continue to play politics with people’s lives?

I was truly afraid he would stand on the wrong side of history.

He chose to be on the moral side of history.

But the beautiful story in all of this is the two Republican women who stood steadfast in the face of derision and threats.

Susan Collins of Maine and Lisa Murkowski of Alaska never wavered in their opposition to the theft of access to care for tens of millions of Americans.

When Murkowski was threatened with official punishment in the form of retaliatory action against her constituents, she shut down her committee’s hearings on appointments to the Department of the Interior, which was the source of the threats against her.

Sen. Capito caved. I don’t know what the enticement — or the threat — was that changed her vote, but Collins and Murkowski stood firm.

I took some heat this morning because I mentioned McCain before the women in a Facebook post. I call bullshit on that.

McCain walked the farthest in his position. Maybe it was because he wants to see the whole law repealed; maybe it was because the stark reality of his own mortality has humbled him. Whatever the reason, he has saved access to health care for tens of millions of Americans.

We knew we had the votes of Murkowski and Collins; McCain’s was the miracle vote.

And while we’re talking about heroes, Sen. Mazie Hirono of Hawaii also has cancer — stage 4 kidney cancer. She also traveled to Washington to vote, making her every bit as heroic as McCain. The media haven’t picked up on it they way they did McCain, so we all need to thank her for her heroic effort.

I have written thank-you notes to all four senators.

But we have won just one battle. The occupant of the White House will not let this go. He has promised to attack it and kill it with a thousand cuts. We are not out of the woods.

So, let’s take some time to breathe this morning, but tomorrow we have to resume the fight. This is not over until every human being in the United States has full access to health care.

 

I can’t sit down

 

Marching to the Capitol with a cardboard “coffin” on Wednesday morning. I was arrested for chanting, “Kill the bill!” Photo by Religion News

 

I have been arrested again, this time for trying to speak truth to US senators.

On Tuesday, 32 of us went into the Senate gallery to watch the vote on opening “debate” on a bill that could rob 50 million Americans of access to health care by 2026.

I was hauled out of the gallery before the action began because someone noticed I had a 5×7 photo of my late son. I just thought he might like to see the circus. Honestly, I wanted to hold him up for John McCain and Mitch McConnell to see.

I spoke before we marched to the Capitol from a church a quarter mile away, begging senators to be truly pro-life and drop their effort to murder tens of thousands of Americans each year by taking away their access to health care. A portion of my remarks was picked up by Now This and the video is circulating on Facebook. I’ll be honest, I’m a little tickled by that. The more people who know about my son, the better. We have to put the faces of real people suffering the real consequences of these people’s actions.

I know some people just stumbled over the word, “murder.”  It seems so harsh. But there is no other word to describe an action that you know will result in the deaths of tens of thousands of innocent people.

So, we marched, then we stood in line for two hours waiting to get into the gallery. I got a little star struck watching Al Franken walk in. I had listened to a podcast of him being interviewed by Larry Wilmore on my drive up to Washington. He’s so smart and so funny. He’s shorter than I thought. I looked over at Mitch McConnell and remarked to the woman next to me that I think he looks even more turtle-like in person.

But before John McCain walked in and voted to open “debate” on a bill that no one has seen, I was hauled out of the gallery for having a photo of my late son. That’s right, I’m a dangerous subversive because I carried a photo.

As I was speaking to a cop, who was taking down my personal information, I heard the chanting start. Now, I don’t know if I was about to be arrested or simply banned from seeing the Senate at “work,” but I looked at the officer and took a deep breath.

The officer, whose name is Michael, and who is the same age my son was when he got sick, said, “Don’t do it.”

“I have to, ” I said. I turned my back to him and started chanting. Then with him behind me, I walked over to the line of people being taken out of the gallery.

It was a little like “Star Trek IV: The Voyage Home,” where Spock, who is not charged with a crime, walks up to stand with Kirk and the others, saying, “I stand with my shipmates.”  I could almost hear my son laughing as that thought entered my head.

I kept chanting as Officer Michael caught up with me and held my elbow. They cuffed us behind our backs as we waited for the elevator, and my nose started itching immediately.

They took us to the building’s garage, where we were searched. As they took our jewelry, wallets, even the tissues I had tucked into my pocket, we sang freedom songs and hymns.

We sang in the paddy wagon, and we sang in the converted garage they had set up to process us. We sang “This Little Light of Mine” and “Hold On,” “Amazing Grace” and “We Shall Not be Moved.” A rabbi among us taught us a Hebrew song.

The officers were all respectful and kind. Several of them even joked with us. One admitted quietly to me that he respected and admired us. Another whispered to me she was honored to be in our presence. They had several coolers filled with cold water and a half dozen big floor fans to keep the air moving in the garage to keep us comfortable. They took off the cuffs and cuffed everyone in front, which is a whole lot more comfortable. We sat on cafeteria chairs and chatted.

There were a few from the North Carolina Moral Monday Movement, including Rev. Rob Stephens and Jennifer “Jeff” Ginsburg, a hospice nurse who was arrested with me in Raleigh on May 30. Jeff, by the way, runs a small box turtle rescue operation, which makes her an expert on turtles. She agreed that McConnell is an evil turtle.

Others, including Dr. Margaret Flowers and Rev. Traci Blackmon, walked with us and sat with us, but didn’t participate in the action because of their previous arrests.

We were supposed to be given a $50 fine and released, but we were charged with disrupting the Senate, which is a slightly more serious charge and means we all have to go back for a court date.

If they think that intimidates me, they should think again. I’m fighting for the lives of every American. I’m fighting for health care as a human right. This fight is way bigger than one bereaved old woman.

After we were released, we were all hungry enough to be grateful for the cold pizza that was waiting for us across the street from where we were being held.

We called an Uber car to take us back to the church for the belongings we left there. The driver was a Muslim man from Afghanistan, who, when he found out who we were, refused to accept payment from us.

“I don’t take money from heroes,” he said.

After I gathered my things and started walking to the Metro station near the Capitol, I saw Sen. Lindsay Graham in the crosswalk. I approached and stuck out my hand.

“Senator Graham,” I said, “I’m from North Carolina.”

“Then we’re neighbors,” he said, smiling.

“I know you’re in a hurry, but I need to speak to you for just a moment.” I pulled out my photo of Mike. “This is my son who died from lack of access to health care. He was a good man, a hard worker, a community volunteer and the light of my life.”

He looked at the photo, somewhat shocked at being accosted, I think.

“”Please, please, sir, I beg you to think about the lives that will be lost, the families who will grieve, before you vote on any health care bill.”

“I will,” he said as he handed the photo back to me.

He voted against the first bill that night. I like to think he saw Mike in his head, but then he voted yes on the second bill.

I am exhausted. I am worried about my own health — I have a bunch of kidney stones — but I have access to decent care and I have to fight for those who do not.

I slept well last night, knowing I have done the right thing and that I will continue to fight these murderers. As long as my heart beats, I will continue this fight. This isn’t for or about me. This is about being truly pro-life. This is about loving my neighbor.

I’m not a hero, I’m just a person following my conscience and my faith. I know how it feels to lose a child, and I live in fear of losing my only surviving son, of outliving both of my children because of the greed of a few powerful men. This is what moves me to action.

I am standing for the lives of my fellow human beings.

I can’t sit down.

 

 

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