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.

 

the morning after

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I started crying about an hour before it was clear that Trump was really winning the election, and I didn’t stop for hours. I shoved the unpopped champagne to the back of the fridge and poured myself a generous glass of bourbon. Since this is the internet and I’ve been lectured about everything down to my coffee drinking, yes, sometimes you do just want to drink straight liquor and sleep the sleep of the dead, and if such a loss isn’t the time, when is?

I woke up probably more hungover from the crying. I went downstairs when the girls stirred. Our houseguest for a week had left to catch her plane back home to Canada before we got up. She was a campaign fellow, a university student studying politics who had spent time working on the Clinton campaign here in Denver. She left the house key, a copy of Stronger Together, and the most beautiful letter. She let me know that she’s still in this fight with us.

“I was exactly the twins’ age when George W. Bush won in 2000…I learned as I grew up, much like the girls will, that sometimes, the right people don’t win…However, the fall of Bush led to the rise of Obama, and sometimes things like this must happen in order to witness some truly incredible things. Since Bush was elected, I became interested in politics and wanted to learn how to fight for the little guy. The first political book I read was The Assault On Reason by Al Gore…I know the future looks scary right now, but you and your family represent a side of America I am glad is still going. Etta and Claire, I already know you will grow up as strong, if not stronger than Hillary and learn from this. You are the reason why I have faith the views and values of Hillary will be passed on. When the girls are ready, like I was, they will read Stronger Together and learn…This is only beginning, and I have faith that Americans like you will continue to contribute society and push for the values we all hold so dear. We will always be #strongertogether.”

Buoyed by her letter, I went into the girls’ room and told him that even though we really wanted her to win, and even though mommy spent all that time in the campaign office, Hillary Clinton didn’t win the election. Claire immediately started crying. She knows Donald Trump says unkind things about and emboldens his supporters to do unkind things to people who are different. She’s a smart kid, and she knows she is different. Somehow she has more empathy and compassion than a lot of white voters did yesterday. I assured the girls that we will keep fighting for kindness in this country, and that we would never stop trying to make this place better. Claire didn’t much feel like eating her breakfast. “I just feel so sad,” she said. I need to let her feel sad. I need to let me feel sad too.

I got them off to school, their lovely, happy, hippy-dippy little school that is shaping them and their classmates into kinder, better citizens by teaching them kindness, courtesy, independence, inquisitiveness, and curiosity. Their teacher had already started circle time, but she and I exchanged shocked looks about the state of this nation. I drove home through the morning rush wondering how so many of us would manage to just live life today. I got home and got back into bed and snuggled with my cat. I think I hoped I’d wake up and things would be different. I woke up, no longer felt the sobbing-hangover, and fixed myself some coffee.

They’re home and napping now, and their wonderful dad just texted to let me know he’s coming home and said “Think about and let me know how I can best help you tonight.” The man should write a book on husbanding. I feel like a lot of the world is telling us Hillary supporters that we need to go ahead and move on already. Move on? Many of us just found out our country isn’t quite what we thought it was, that white people are still fearful enough and angry enough to elect a dishonorable, unkind, hate-mongerer to the highest office in the land, and that’s a lot to deal with. We are worried about our friends, family, and neighbors in this new world. Books about raising kids to be emotionally stable adults emphasizing how important it is to let our children feel their feelings and work through them. We need to allow ourselves to do the same. We need to be allowed to grieve and cry and rage before we are expected to figure out our next steps.

Tonight I want to go out to dinner with my family. I don’t feel like cooking. I want to let my kids take a bubble bath, and bundle them off to bed in their footie pajamas that make them so cuddly and cute. And then I think I want to watch The West Wing and pretend we just elected Bartlett instead. Tomorrow, we’ll see how I feel.

If you’re sad or angry or scared today, your feelings are valid. Check in with yourself and see how you can best care for yourself right now. You don’t have to have a grand plan to stop Trump from ruining the world right now. Obama is still the president, at least until January, and we’ll figure more stuff out by then. For now, let yourself feel your feelings. I’m here if you need to talk.

I’m with her. And her too.

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You guys know I’m a yellow dog who’s all amped up for Hillary. I’ve been working really hard for her. But I’ve never really said why.

Honestly, when asked why I’m With Her, I usually want to say “EVERYTHING.” My politics are driven by my most deeply-held values: wholeness, unity, justice, equality, peace. In a world where people seem proud not to identify with either party, I can’t really pretend that I don’t agree with one on basically every issue. I care about women’s rights, LGBTQ rights, the environment, the poor, immigrants, education, and energy. I love Jesus, and I’m pro-choice.

But just like Claire’s diagnosis has changed our lives in many ways, it has changed my politics. My feminism has become bound up with disability rights. I want her to have every opportunity in life. I want her to always be treated with dignity. I want her to live in a world where she is valued as a whole person, where she will never worry about access to employment or healthcare, where she can dream big dreams and achieve them. And there’s only one candidate that can show my girls their dreams can include the presidency and who will fight for Claire’s rights and healthcare. It’s the candidate who has been fighting for children, people with disabilities, and everyone’s access to healthcare for her entire career.

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One candidate has literally mocked people with disabilities. One candidate kicked a kid with cerebral palsy out of his rally: “Protesters get kicked out; it’s actually a mother and her children, one of whom who has cerebral palsy and worries what a Trump presidency would mean for people with disabilities. Supporters kick at the family, including the boy’s wheelchair, as Secret Service tries to escort them out.” His mockery of people with disabilities encourages his supporters to assault a person with disabilities and his family. His presidency threatens the very dignity and safety of people with disabilities, not just because he has promised to take away the healthcare reforms that have helped so many, including our family, but because he fails to set an even basic human kindness example for how we should treat people with disabilities. It shouldn’t shock anyone that he has zero policy proposals to help people with disabilities since he has so few policy proposals in general. (The man claims he will make America great “again” but seems to have very few concrete plans to make that happen.)

Hillary, in contrast, devoted an entire speech to policy proposals that would help people with disabilities. She proposes ending policies that allow people with disabilities to be paid less than minimum wage. She wants Congress to ratify the UN Convention on the Rights of Persons with Disabilities. She wants to improve access to employment and education for people with disabilities. And she wants to continue to improve access to healthcare for people with disabilities.

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Photo credit: Whitney Loibner

When I saw Bill Clinton speak at a rally on Friday, he talked about meeting a young Hillary supporter from Florida. He told Bill that he was a fan of Hillary’s because he had a feeling she “wouldn’t make fun of” him. Bill told him he was very smart. “That’s what they say, but I have a hard time getting through the day,” the boy said. Bill told him his feelings were correct, that Hillary has been fighting for kids like him for her entire career (like when she helped found the still-operational organization Arkansas Advocates for Children and Families), and that while in the Senate she had work
ed on legislation to help people with Autism.

I always knew I’d be voting for my first female president for my daughters. I didn’t always know I’d have a daughter whose spina bifida would turn me into a disability rights advocate. But because of her, I have one more reason to be proud to stand with Her.

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I’ll be at the campaign office today and tomorrow. If you have any time to spare at all, please do what you can to help out. You can even phone bank from home to make sure people know where their polling place is and have a plan to get there and vote. We need all the help we can get! And above all: get out and vote! Even if the line is long. It matters so much.

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.

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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.

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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.

because it must be said, apparently: I’m pro-choice

It has come to my attention via my blog stats that an anti-abortion website is using my name, words, and image of me and my kids to suggest I support their cause. This is quite upsetting and feels rather violating, as you might imagine if someone suddenly started using your face (or your child’s) to support a cause you don’t.

I’m quite surprised they’d want my name associated with their cause at all, because I’ve made no secret of my support for a woman’s right to choose an abortion, both in writing and by testifying before my state legislature and even on the local news. While I am a loud and proud mom to a child with a disability, I prefer to take a disability-positive stance rather than opposing legal abortion. Furthermore, I have a very serious heart defect, very nearly died as a result of my pregnancy and birth experience, and have been told in no uncertain terms by my doctors that any future pregnancies would be life threatening. I have an IUD that will hopefully keep it from coming down to it, but I would not think twice to save my own life and stay here to continue caring for my two existing children who need me.

I know I’m within my legal rights to request my image be removed, for sure, but I’m not sure I can do much about my words being quoted and used in this manner.

In the meantime, I want it to be very very clear: I am Sarah Orsborn, I have beautiful twins, one of my daughters has Spina Bifida, and I have a heart defect. I support safe and legal abortion access. I am pro-child, pro-family, pro-disability-rights, and unabashedly pro-choice.

If you came here via LifeNews expecting something else, I’m setting the record straight.

Yes, I have a child with a disability. I’m still pro-choice.

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I feel I have to write this post, in the midst of Spina Bifida awareness month and all, because I don’t want anyone to get the wrong idea.

I see it a lot, parents of kids with SB or other disabilities, angry that at some point in their fetal diagnosis experience, a doctor dared offer them the option of terminating their pregnancy. I agree that a lot of the time, this “option” is presented in what some feel is a hurtful way, a way they believe suggests that their kids’ lives aren’t worth living, a way that seems to later produce parents who are defiant– doctors said my kid shouldn’t live, but NOW LOOK AT HIM! TAKE THAT, DOCTORS! No one ever presented that option to us, just like the fetal surgeries weren’t an option for us, because it would have risked the other twin too much, so I have never felt pressured in any way to terminate a pregnancy.

I also admit that I read things like a stat that says 60% of parents who receive a fetal diagnosis of Spina Bifida choose termination, and it makes me sad. Because I look at my beautiful, vibrant Claire, and I do think her life is obviously worth living. I’m madly in love with her. I can’t imagine life without her.

But the thing is, I realize that my life, my choices, and even my daughter aren’t the same as everyone else’s situation. I realize, and have testified to that effect before the Arkansas Senate (and on the local news), that not everyone receives a manageable fetal diagnosis– many receive a devastating one. And in the midst of tough choices and pain, I want every family to have safe, compassionate, OPTIONS.

So there it is. I’m the mom of a kid with a disability, and I’m pro choice. Part of why I write, part of why I participate in things like #embracethebif and want people to see what Spina Bifida looks like is because I do think that 60% stat should be far lower. I do think parents should know that kids like Claire are whole, complete, beautiful, and vibrant, because that might make the choice to carry such a pregnancy a little bit easier. It’s also why I support disability rights, fight stigma, and want access to healthcare, childcare, and developmental services. It’s why I support education and employment access. All things that might make the choice to bring a child with a disability into this world a little easier.

But I’m still pro-choice. Pro-child, pro-family, pro-disability, pro-choice. I hope that even if you disagree, you can respect that. I hope that even if you disagree, we can keep fighting together for all the other stuff we do agree on. I don’t want to fight with anyone. I just had to put this out there because I was uncomfortable with some of the anti-choice ways Spina Bifida Awareness rhetoric can be used, and I don’t want to be lumped in with that.