My kid has spina bifida. The AHCA is a nightmare bill for kids like her, and pro-lifers should be calling their Senators in droves.

I decided, in light of the AHCA, to research the average cost of health care for people with spina bifida. They call them “million dollar babies” for a reason. The first year, according to an article I found on PubMed, is $41,000. Every year after that is around $14,000. (The first year is the most expensive, usually, because of neurosurgery and NICU stays. I’d bet we racked up more than $41,000 in our first month of life.)
In Arkansas, we had private insurance, as well as Medicaid TEFRA, for which we paid an income-based premium and which we qualified for on the basis of Claire’s disability. It covered 100% of what our insurance didn’t. And there’s a lot that insurance doesn’t cover, but that is necessary to help kids with SB be as independent as possible, like therapies and developmental preschool. In Colorado, a supposedly more progressive state, we still have private insurance, but no Medicaid. We end up paying more out of pocket for our daughter’s care, even though we are privileged to have excellent insurance because my husband works for the university hospital.
I remember when I testified before a committee about Arkansas’ proposed 20 week abortion ban. I talked about how 20 weeks is right around the time that people usually get a fetal diagnosis that changes their very wanted pregnancy into a nightmare. One thing that people are wondering when they get that diagnosis is, can we afford to provide this child with the care she will need for the rest of her life? Will this bankrupt us? It’s a very real consideration. And I have read that 60% of people who receive a fetal diagnosis of spina bifida choose termination.
I’m pro-choice. I support safe, legal abortion care for any reason. However, I also truly believe that there are ways we can help people keep these WANTED pregnancies instead of terminating. And one of those ways is helping them afford the care their disabled kids will need for their entire lives.
The AHCA comes from the supposedly pro-life party. And yet this is a deadly bill for people with disabilities, many of whom depend on Medicaid for their life-sustaining care. This bill will make the answer to “Can we provide this child with the care she will need?” a “no.” I am confident it won’t help, and will in fact increase, that 60% termination statistic.
It also creates new worries for us as parents of a kid with spina bifida. Will she stand to have her coverage capped at some point? Will our insurer say, welp, you’re at the limit, we won’t pay any more for you, and kick her off? Will she be able to get a new policy with her pre-existing disability? Will she be able to work as an adult, or will she have to stay unemployed, lest she get too “rich” for her meager benefits? Will my husband have to stay in his job forever to ensure we keep the insurance we have now, because she might not be covered if we have to switch providers?
If you haven’t already called your senators about the AHCA, please do so. It’s a needless “screw you” to Obama that will cause pretty much everyone to pay more for less coverage, and will literally lead to people dying and pregnancies being terminated. Repealing the ACA and replacing it with this cruel bill helps no one but rich folks who will be getting a tax cut. Please call your Senators and oppose this bill. Today.
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we will not comply

litany of resistance

In 2008 or so, around the time I started this blog, I went down a rabbit hole that changed my faith forever. I think it was because I was a Relevant magazine subscriber and frequent message board contributor there (if you were on the Relevant boards at any point in the first decade of the 2000s, you may remember someone named funnyface with an Audrey Hepburn avatar). Thanks to Relevant, I heard about Rob Bell. I started listening to his sermons (and, briefly, to some Mark Driscoll sermons because I thought the two Mars Hills were related: BOY THEY WEREN’T), reading his books, and then reading the people he footnoted in his books. Rob Bell, Dallas Willard, Brian Maclaren, and Shane Claiborne radically revolutionized my thinking.

The Way of Jesus became not primarily a creed I promised to believe in but an actual lifestyle. It changed the way I ate, the media I consumed, my politics, everything. Heck, it’s still changing me. Shane in particular challenges areas that I might not actually want challenged all the time, particularly my consumerism. By the way, I told him this when I had the opportunity to meet him last year, as I had helped lead a class at church based on his and Tony Campolo’s Red Letter Revolution, and then he came to speak. He smiled. He really doesn’t care about my angst around wanting All The Things.

Shane literally lives his faith in a way few do. He’s been a radical and a resister of empire since at least the Bush administration. And I’m finding myself drawn back to his work at the beginning of the Trump regime (I refuse to call it an administration, because an administration implies some level of competence and experience and reason that does not exist with this presidency). We’re only a week in, and I’m already finding my emotional and spiritual reserves tapped, my cynicism rising, and my anxiety raging. I need to get grounded in things that will feed and fuel me through months and years of this. I’ve been doing things that busy my hands and occupy my mind, like sewing, cooking, and crafting. I took a long walk with my dog yesterday while listening to a Robcast from Rob Bell, and it felt so good, I’m planning to do it more often. And I’m coming back to the book by Shane that changed my faith in 2008.

Get this. It’s called Jesus for President: Politics for Ordinary Radicals. You should absolutely get a copy. (That was not an affiliate link, btw. In fact, it’s to the used copies of the book, because Amazon is currently out of stock on the paperback.) In particular this week, my heart is drawn back to the Litany of Resistance in the back of the book. Since Shane says he invites readers to use and adapt it, I feel ok reprinting it here. I am thinking of writing out a copy so I can read it every day. I pray it fuels your reserves for resistance as it does for me.

A Litany for Resistance

from Jesus for President by Shane Claiborne and Chris Haw

One: Lamb of God, you take away the sins of the world.

All: Have mercy on us.

One: Lamb of God, you take away the sins of the world.

All: Free us from the bondage of sin and death.

One: Lamb of God, you take away the sins of the world.

All: Hear our prayer. Grant us Peace.

One: For the victims of war.

All: Have mercy.

One: Women, men, children.

All: Have mercy.

One: The maimed and the crippled.

All: Have mercy.

One: The abandoned and the homeless.

All: Have mercy.

One: The imprisoned and the tortured.

All: Have mercy.

One: The widowed and the orphaned.

All: Have mercy.

One: The bleeding and the dying.

All: Have mercy.

One: The weary and the desperate.

All: Have mercy.

One: The lost and the forsaken.

All: Have mercy.

One: O God, have mercy on us sinners.

All: Forgive us, for we know not what we do.

One: For our scorched and blackened earth.

All: Forgive us.

One: For the scandal of billions wasted in war.

All: Forgive us.

One: For our arms makers and arms dealers.

All: Forgive us.

One: For our Caesars and Herods.

All: Forgive us.

One: For the violence that is rooted in our hearts.

All: Forgive us.

One: For the times we turn others into enemies.

All: Forgive us.

One: Deliver us, O God.

All: Guide our feet into the way of peace.

One: Hear our prayer.

All: Grant us peace.

One: From the arrogance of power.

All: Deliver us.

One: From the myth of redemptive violence.

All: Deliver us.

One: From the tyranny of greed.

All: Deliver us.

One: From the ugliness of racism.

All: Deliver us.

One: From the cancer of hatred.

All: Deliver us.

One: From the seduction of wealth.

All: Deliver us.

One: From the addiction of control.

All: Deliver us.

One: From the idolatry of nationalism.

All: Deliver us.

One: From the paralysis of cynicism.

All: Deliver us.

One: From the violence of apathy.

All: Deliver us.

One: From the ghettos of poverty.

All: Deliver us.

One: From the ghettos of wealth.

All: Deliver us.

One: From a lack of imagination.

All: Deliver us.

One: Deliver us, O God.

All: Guide our feet into the way of peace.

One: We will not conform to the patterns of this world.

All: Let us be transformed by the renewing of our minds.

One: With the help of God’s grace.

All: Let us resist evil wherever we find it.

One: With the waging of war.

All: We will not comply.

One: With the legalization of murder.

All: We will not comply.

One: With the slaughter of innocents.

All: We will not comply.

One: With laws that betray human life.

All: We will not comply.

One: With the destruction of community.

All: We will not comply.

One:  With the pointing finger and malicious talk.

All: We will not comply.

One: With the idea that happiness must be purchased.

All: We will not comply.

One: With the ravaging of the earth.

All: We will not comply.

One: With principalities and powers that oppress.

All: We will not comply.

One: With the destruction of peoples.

All: We will not comply.

One: With the raping of women.

All: We will not comply.

One: With governments that kill.

All: We will not comply.

One: With the theology of empire.

All: We will not comply.

One: With the business of militarism.

All: We will not comply.

One: With the hoarding of riches.

All: We will not comply.

One: With the dissemination of rear.

All: We will not comply.

One: Today we pledge our ultimate allegiance to the kingdom of God.

All: We pledge allegiance.

One: To a peace that is not like Rome’s.

All: We pledge allegiance.

One: To the gospel of enemy-love.

All: We pledge allegiance.

One: To the kingdom of the poor and broken.

All: We pledge allegiance.

One: To a king who loves his enemies so much he died for them.

All: We pledge allegiance.

One: To the least of these, with whom Christ dwells.

All: We pledge allegiance.

One: To the transnational church that transcends the artificial borders of nations.

All: We pledge allegiance.

One:  To the refugee of Nazareth.

All: We pledge allegiance.

One: To the homeless rabbi who had no place to lay his head.

All: We pledge allegiance.

One: To the cross rather than the sword.

All: We pledge allegiance.

One: To the banner of love above any flag.

All: We pledge allegiance.

One: To the one who rules with a towel rather than an iron fist.

All: We pledge allegiance.

One: To the one who rides a donkey rather than a war horse.

All: We pledge allegiance.

One: To the revolution that sets both oppressed and oppressors free.

All: We pledge allegiance.

One: To the way that leads to life.

All: We pledge allegiance.

One: To the slaughtered Lamb.

All: We pledge allegiance.

One: And together we proclaim his praises, from the margins of the empire to the centers of wealth and power.

All: Long live the slaughtered Lamb.

One: Long live the slaughtered Lamb.

All: Long live the slaughtered Lamb.

 

do one thing every day that scares you

Or in my case, do it twice a week.

If I call my family or best friends on the phone, they usually answer with a panicky “IS EVERYTHING OK?” This is because I do not like talking on the phone. I hate it. Once, my voicemail was borked for like 6 months, and I didn’t realize it. I was just delighted that everyone had finally realized that texting is my love language and stopped calling me.

But, my kids recently started preschool, and I signed up to volunteer for the Hillary Clinton campaign in my newfound free time. And you know what they needed me to do? Phone bank. Yep. I go in, and they hand me a flip phone and a list of names to call. Thank God they’re at least people who have supported Democrats in the past, because getting yelled at by Trump supporters on the phone isn’t something I want to deal with– seeing them pop up in my Twitter mentions is bad enough.

IMG_9691

This is me, awkwardly making calls on a flip phone.

So yeah, twice a week, I go do a thing I utterly hate. I actively dread it before I go. But I push through the awkwardness and anxiety because I think winning this election (and electing Democrats to the House and Senate) is SO IMPORTANT. I want to be able to tell my kids one day that I did everything I could to stop Donald Trump and elect our first woman president. The idea of a Trump presidency gives me actual nightmares. Knowing that I’m helping stop it helps me sleep at night.

IMG_9784

Channeling RBG helps me be brave.

Do you have any free time at all? Does the idea of a Trump presidency scare you? Then push through the awkwardness with me and sign up to volunteer. Go to hillaryclinton.com, click ACT up top, and sign up. An organizer will contact you (mine’s an awesome guy named Cortrell) and get you signed up to do whatever you can in whatever time you have. You might end up phone banking. You might register voters. You might canvass your neighbors. You might do data entry. But you’ll be helping America avoid a Trump presidency, and that is a BIG FREAKING DEAL. It’s worth doing, even if the idea of calling strangers on the phone makes you break out into a cold sweat. We can do this. After all, we’re #StrongerTogether.

I am not Trayvon. But I AM the woman in the elevator.

The whole country seems to be unsettled now that the trial is over and George Zimmerman has received zero punishment for the undisputed fact that he provoked a fight with and then shot and killed an unarmed teenager named Trayvon Martin. All I keep thinking is imagining myself in his parents’ shoes, my baby killed and getting no justice. But the truth is, despite all the folks saying “We are Trayvon,” I’m not, and my babies *aren’t either. We are *unlikely to be perceived as threats based on our race. We *are unlikely to be held to a higher standard of suspicion. We *likely won’t be required to moderate our clothes or behavior or whereabouts in order to make others feel safe and thus ensure our own safety.

And Questlove has written a great piece about what it feels like to be like Trayvon, to be black and male in this country, to constantly be worrying about how others perceptions of his danger level affect his own safety. And I think we should all read it, and I think we should all think hard about the way racism and segregation affect our own day to day lives, and the fact that a lot of us live in neighborhoods where seeing a black man walk down our street would be so unusual as to be perceived as a threat. My friend Kyran, for example, has been asking some great questions about the intersection of economic and racial injustice in our communities.

But at the same time, the central story Questlove tells, about how hurt he felt by a woman who lived in his building clearly perceiving him as a threat when she was alone with him on an elevator, well, I am that woman, and I can’t say I blame her. If Questlove wants us to all walk in his size 14 shoes, then he needs to know a thing or two about that woman’s high heels, about what it means to be a woman in rape culture.

We are told over and over again that rape is something that happens to girls who aren’t vigilant enough. Who walk down the wrong streets at the wrong time in the wrong company. Who have too much to drink. Who wear the wrong clothes. Who send out mixed signals. You are constantly on your guard or you “get raped,” a phrase that has always bothered me because it’s like “got milk?” As if I went and picked it up at the store or had some say in the matter.

I’m not often alone in public these days, but I chronicled lots of harassment and intimidation from the days when I used to be, which you can find under my Bus Stories tab. It was daily, and the general message I got was: to be female, alone, in public is to be at risk.

When I am alone in an isolated place, my keys are between my fingers in case I need to use them as a weapon, and I have my phone out and ready to dial 911 if I need to. I would certainly be wary to be on an elevator with a strange man of any race, because an elevator is an isolated place. And this vigilance is exhausting and numbing, and there were days I have come home and literally cried because one more man yelled something ugly and intimidating at me as he drove past.

To be a woman in public is ALSO to be told you “aren’t shit,” as Questlove says he’s learned. It’s to be told you are an object for the taking, a message made clear not just by words shouted out of moving cars like “HEY SUGARTITS,” but also in the looks, and in the ways people talk about those unvigilant girls who get themselves raped.

I think, somewhere, there’s a place where Questlove and that woman in the elevator have something in common: patriarchy tells them both they ain’t shit. They both have varying levels of privilege, him as a man, and her as a white woman. It’s only in taking down the patriarchy that they can both feel safe in public.

*Words changed slightly from original post in response to comments and in an effort to make clear that I am attempting to recognize the privilege afforded to women perceived as white in this country. I don’t want to leap to the assumption that we are never seen as threatening by others, simply recognizing the fact that we usually aren’t.

**Traffic and comments keep rolling in on this post, and while I’m really happy with the attention it’s received, I’m also busy chasing 16 month old twins, and don’t have time to reply to every comment. I would also urge you to check out this beautifully-written, painful post that’s another take on the woman in the elevator. The comments and responses to this post have been thought-provoking and inspiring. I’d say a great step toward dismantling the system I believe hurts both the “woman in the elevator” and Questlove is to think about our fears, confront and examine them. I believe there are reasonable steps toward self-preservation, but there are also walls and barriers that separate us from one another. I need to focus more on reaching out.

Ms. Bufflo goes to the capitol

capitol

Image I took on my way inside to testify before the committee, via my Instagram feed.

Today, I spoke before an Arkansas senate committee. Last night I was on the evening news.

Rep. Andy Mayberry is making national headlines by trying to ban abortion after 20 weeks of gestation (that’s the halfway mark, FYI). He claims this is because this is the point at which a fetus begins to feel and respond to pain, and he cites some studies, but this is hardly an established fact, and is controversial in the medical community. In the committee today, he testified that 98% of abortions happen before 20 weeks. Why would the minority get such a late abortion? It’s not because they just didn’t get around to it or had a sudden change of heart. Something big happens at 20 weeks. It’s the point in a pregnancy when the “big ultrasound” happens. The one that tells you if you’re carrying a boy or a girl (or two girls, in my case), but also the one that tells you for the first time that there could be something seriously wrong, even life-threatening, with your fetus. I know what it’s like to sit in that ultrasound room and get bad news. Like Andy Mayberry, who also has a daughter with spina bifida, I am fortunate that our news wasn’t as bad as it could have been. My daughter and the Mayberry’s daughter have a condition that is treatable and manageable and won’t stand in the way of a full life. Many parents are not so fortunate. For many parents, that moment in the ultrasound room is what turns a wanted pregnancy into a nightmare of heartbreaking news and difficult choices. Placing an abortion ban at that point in a pregnancy leaves these parents without options right when they need them most. It places a legislature between families and their doctors, right when those families most need compassionate care.

I know some will say that the bill has been amended to include exceptions for the health of the mother, for fetal anomalies, and for rape and incest. But as one of my own doctors testified before another committee, when we’re talking criminality for doctors who provide abortions, how much of threat does there have to be before it’s “enough” to justify an abortion? I have a congenital heart defect and a previous severe cardiac pregnancy complication, but no one can say exactly how risky another pregnancy would be for me. My doctors agree that I should not have more children for the sake of my health, but my condition is very very rare, and there isn’t much data on it, let alone actual odds of my survival. Do you think my doctors are willing to risk jail time and the loss of their career and livelihood on my chances of survival? I don’t. And yet I am not willing to risk leaving my girls motherless, and should my IUD fail (as it could, I personally know people who became pregnant with an IUD), I would not think twice before terminating to protect my own life and stay here to care for the girls who need me.

The bill passed the committee despite my testimony. It will probably pass the Senate. The governor will probably sign it. I fear for the state my girls will grow up in, and I fear for their rights and mine.

For every mother who testified that she’s glad she carried her anencephalic baby to term (that’s a baby with no brain and a damaged skull, with no chance of survival outside the womb), there are mothers thankful they had the opportunity for a post-20-week abortion (essentially an induction of labor), to prevent needless suffering for her and her doomed child. For everyone like Andy Mayberry and me, whose kids will have challenges but lead full and happy lives, there are people who got literally fatal news. For everyone like me who survived pre-eclampsia and peri-partum cardiomyopathy, there are people whose fatal complications developed too early to save themselves and their babies, and were forced to deliver to save their own lives, meanwhile their babies could not be saved. For everyone on the other side who calls themselves a compassionate conservative fighting for life, there is someone like me, literally fighting for her own, asking for compassionate choices when we need them most.

If you’re in Arkansas, please start writing to your senators and the governor and urge them not to let this bill pass. Post 20-week abortions are rare because they only happen in the most dire of circumstances. These people deserve compassion.

Boycott Chick-Fil-A?

Everyone I know is talking about Chick-Fil-A. Most of my friends are talking about boycotting, because they’re good people who don’t like it when people hate on gay people. I don’t like it when people hate on gay people, either, but I’m not boycotting. For a bunch of reasons. Because these are a bit long for say, a tweet or Facebook status update, I figured, hey, you can blog about things that aren’t the babies, you know.

First off, I absolutely disagree with Dan Cathy, the COO of Chick-Fil-A. I don’t think marriage needs “defending” from anything, and if anything, I think the loving, egalitarian example found in many gay marriages could do wonders for this institution. I’m hopeful that marriages that can’t default to tired gender roles could teach us all a thing or two about equal partnerships.

My problem is, if I boycotted every company whose executives say things I disagree with and give to causes I disagree with, I’d be unable to eat or shop most anywhere, because most gazillionaire executives happen to be very conservative and give to very conservative causes. As you may have guessed, I am nowhere near conservative. And also, consistency would require me to boycott other companies, like Anthropologie and Urban Outfitters, for example, whose CEO has given thousands of dollars to one of the most repellent and homophobic politicians around, Rick Santorum. Even the CEO of Whole Foods publicly opposed health care reform, something I very much support. And Target is actively anti-union and has supported anti-gay political candidates, so I’d have to stop shopping there too (seriously, if you feel smug about not shopping at WalMart and continue to shop at Target, get over yourself).

Another issue is: Chick-Fil-A is a franchise. Meaning, when we boycott, we’re mostly hurting local business owners rather than the big bad company. I know there is an argument to be made that they knew what kind of company they were buying into, but I’m not ready to equate owning a franchise with wholehearted support of the COO’s politics.

Thirdly: I’ve yet to hear about Chick-Fil-A actively discriminating in either hiring or service. Are they refusing to let gay folks be the “Eat Mor Chicken” equivalent of burger flippers? Are they refusing to serve waffle fries to gay people? Since I’m not willing to actually boycott every company whose COO says things I disagree with, I will reserve my boycotts for companies that actually do discriminatory things. (Not to mention, if I *were* boycotting CFA, it would probably mostly be because I try not to eat unsustainably/inhumanely raised meat, and CFA’s nuggets certainly don’t fit into my food rules.)

Still, I totally want to reaffirm my support for friends who do choose to boycott. I totally believe in voting with my dollars, and if anything, am being inched toward actually boycotting not by the boycotters, but by the whiny defenses people are making of CFA, as if being criticized or boycotted is just as “bad” as being homophobic. Free speech doesn’t include freedom from criticism or consequences for that speech, and whining about it a la Sarah Palin is just totally repellant to me. It’s like people who think being called a racist is just as bad as oh, actually being racist.

The only thing I ask of my boycotting brothers and sisters is: please stop acting like those of us who aren’t ready to join you are somehow against you or the cause of equality. I know liberal folks gay and straight who are on both sides of the boycott. (Hilariously, one gay friend quipped, “Waffle fries may be too high a price for equality.”) It’s not often I get to feel like a “moderate,” but this is one kerfuffle where I do. I hope you don’t think I’m a traitor to the cause.

Update: this post generated a great conversation on Facebook, where I was reminded that a dear friend was hurt very deeply by a degayification program run by Exodus International, an organization that CFA supports. So I finally have a reason to make me pull the trigger on no longer giving CFA my business: solidarity with my friend. I guess that now, if I get a craving for terrible chicken that causes me to chuck my food rules out the window, I’ll get some spicy chicken at Wendy’s, whose support of foster care adoption is a corporate cause I can get behind (please don’t tell me they oppose letting gay people adopt).

evangelical economics

President Obama's proposed 2012 budget, via: http://www.whitehouse.gov/omb/budget

I have to say up front: I do not consider myself an Evangelical. I grew up Presbyterian (PCUSA) and have only gotten more “liberal” theologically from there. Jesus is still alright with me.

My friend Sarah turned my attention to recent polling of Evangelicals on the issue of the federal budget. Apparently, were they in charge of the government’s spending, Evangelicals are more likely than the average American to want to cut funding for: aid to the poor around the world, aid to the unemployed in our own country, and funding used to protect and care for our environment. From the piece: “evangelicals were more supportive of funding cuts in every area except military defense, terrorism defense, aid to veterans, and energy…Evangelicals were more likely to favor an increase in defense spending (45 percent) compared to non-evangelicals (28 percent).”

From this Jesus-follower’s perspective? Talk about bassackwards. Good gravy.

The defense spending is particularly troubling to me. We’d rather spend money to wage war against the people of the world than to spend money on foreign aid to help them build the sorts of stable economies and governments that make more less likely? And we’re not sure we’re even spending enough money on the military and war in the first place?

It makes me wonder if the translations of the Bible those other folks are reading are just WILDLY different than the TNIV I usually read. My love for Jesus compels me to care for the poor and needy and unemployed, both in my own country and around the world. My love for Jesus compels me to care passionately about God’s creation, desiring to treat it with the respect I’d treat anything I borrowed from a friend, and to preserve it so it can be enjoyed by future generations. My love for Jesus compels me to believe that even my nation’s enemies are my God’s children, and to oppose all violence and war. And if I were to be making my nation’s budget based on what I know about Jesus, I’d be cutting spending on violence and war, and increasing spending to help the most vulnerable among us, particularly during a global recession.

*Edited to add: of course I understand that many Evangelicals make care for the poor a private concern, and think that if the Church did its job, the government wouldn’t need to step in. But, when this polling data so clearly demonstrates support for militarism, I have to wonder if the public/private concern is really the issue here, and not just some really whacked out priorities.