But as much as there is to share about what I’ve learned this year, there’s thanks in order to you, dear readers, for hanging in with me throughout all the feelings and frustrations and for your own listening ears, your caring, and your advocacy. Whether you’re a new reader, or you’ve been around for awhile, thank you for sharing our family’s struggle. I certainly hope you’ll let me know which posts continue to resonate with you, what you like best and what you like least about the blog, what you’ve learned in 2017 and what you’re looking forward to in 2018.
Here is a look back in hopes that these lessons learned from the year prior will carry us forward in making this world more just, more healthy, more good, and more compassionate:
On Saturday morning, after weeks of seeing proposed changes to this tax bill and fighting against the disastrous impacts it could have on people with disabilities, people who are sick, and people who are poor, I got lost in the numbers. You see, as I started to comb through the final outline of the bill, I started to wonder whether it was really all that bad. It does seem to be providing more generous tax cuts to many more people than initially forecasted. It’s possible cutting taxes for corporations could create economic growth. And they did remove some of the truly egregious aspects–taxes on graduate student tuition, while expanding medical expense deduction thresholds.
But then I scanned the text for the lectionary the following morning—Isaiah 61:1-4, which reads:
The spirit of the Lord God is upon me,
because the Lord has anointed me; he has sent me to bring good news to the oppressed,
to bind up the broken-hearted, to proclaim liberty to the captives,
and release to the prisoners; to proclaim the year of the Lord’s favour,
and the day of vengeance of our God;
to comfort all who mourn; to provide for those who mourn in Zion—
to give them a garland instead of ashes, the oil of gladness instead of mourning,
the mantle of praise instead of a faint spirit. They will be called oaks of righteousness,
the planting of the Lord, to display his glory. They shall build up the ancient ruins,
they shall raise up the former devastations; they shall repair the ruined cities,
the devastations of many generations.
And I was reminded that our God is a God of justice (by Isaiah, because he says so, in verse 8).
So tax bills, especially for us Christians, aren’t a matter of crunching the numbers but of seeing the bigger picture, and we simply cannot support policies that cut taxes for the wealthiest among us while ignoring the plight of the poor. Numbers aren’t just numbers. They represent people. And people who are struggling should be prioritized over tax cuts to those who are wealthy.
But that’s not what our government wants us to think.
But just stop for a moment and think about why you pay taxes and who you want those taxes to serve? Our family moved to a high-tax district but one that we knew would support Lucia’s special needs at school in spite of the cost, and I’m so thankful that those who live around us are willing to pay more so children can get a good education. Our family also benefits from services through the Medicaid program that is funded by federal and state tax dollars to support people with disabilities, people who are poor, and people who are old, especially those who have substantial medical need for daily living. Many elderly people who are sick and disabled benefit from the substantial Medicare program that threatens to be cut to support this bill.
So here we are again, cutting benefits for people who really need them, so rich people and corporations can get a tax break. For a moment, I accepted that there could be some breaks for all because that’s what the government is saying, but that’s not only fuzzy math, it’s fuzzy morals. Our taxes can’t pay for the things people really need and give huge breaks to the wealthy, and what’s more, they shouldn’t bother with making the rich richer, ever, because it’s wrong. The Old Testament prophets and Jesus, whose birth we celebrate in this season, make it clear that Christians are called to liberate those who are oppressed and to bring good news. This tax bill is not good news and we cannot ignore our responsibility, as unpopular as it may be, to speak otherwise. We cannot turn mourning into gladness unless justice is justice for all.
Wake up, American Christians, it’s almost Christmas, and we have work to do.
But I’ve also heard a lot of people talk about how tired and frustrated they are and how much they want to give up and throw in the towel. It’s been a long, hard year; I’ve written about just how hard it’s been for our family, I’ve lost lots of sleep over these threats to healthcare (I’m up late writing this), and I’m really scared and worried, too. So I can really understand if you feel like things may never change and it’s not worth it, and you just want to give up. I think I know how you feel.
But we can’t give up just because things are really, really hard. That’s why we have to fight harder than ever.
The problem when you or I threaten to quit is not just that those who are against us win, but it’s also that we buy into the belief that we’re all alone in our fight, that it’s not possible to win, because there’s not enough people who care, and that no matter what we do, we can’t make a difference.
But let me remind you that most people in this country didn’t vote for our sitting president, that worldwide participation in the women’s marches in January 2017 were estimated at five million people, that over the summer, you and your phone calls defeated threats to undermine and repeal the Affordable Care Act over and over and over again, and so despite what you may be feeling, 2017 was not just Trump’s or the Republicans’ year, but also a year in which the American people spoke up and it truly made a difference.
You made a difference for my family and me.
And time and time again, when I felt truly lonely and haggard and upset, your words and phone calls buoyed us to believe that it’s not just everyone for themselves but that we can and will and should care for those in need.
So please don’t give up.
If you’ve read this far, I’m sure you know that this awful tax bill has to go to conference and a lot can change along the way. So let’s make sure those changes protect Medicaid and people who can’t afford to pay taxes and graduate students and people with disabilities. Let’s take to the streets again if we have to. Let’s jam the phone lines and confront our members of Congress. And build each other up. Stand together, across differences, and make it clear that you stand with people in need. Don’t let fear and isolation win out against the truth that we’re a people who can love and care for one another, who can do more together, with our rich diversity, than we can do alone.
Honestly, that will really stick it to them: a bunch of ramshackle, joy-filled activists who believe in themselves and one another.
Give up? Me? You? Oh, we’re only just getting started.
The other week a colleague and I did a presentation for Ph.D. students about the job market. She told them that when she started looking for jobs her own adviser told her that it’s not that difficult to find a job, but to find a job that leads to or amounts to a career takes about four to five years on average in academia.
I could see the desperation and disillusionment in the students’ eyes, but deep inside, I sighed a bit. Her words reminded me that we so often look at others around us and all we see is where they are now, the fruits of their hard work, and we assume things came quickly and easily to them, probably—no–definitively, more quickly and easily than they came for us.
But what if that’s not the truth? What if I reminded you today that good things take time? And that the good things that others have, those took time, too.
See, despite my sigh, I saw myself in the eyes of those students. Here I am not even three months into my new job and I’ve been beating myself up a bit, because I haven’t made it around to all that much of my writing, I don’t have a clear three-year vision for this appointment, and I’m not sure what role I can or should play in institutional change.
But it’s been three months.
And my expectations crammed into those short months, for the next three years, reek of impatience, perhaps even faithlessness. I wouldn’t expect to take a new job in a church and within three months implement dramatic changes. No, I’d recognize and routinize the value in listening, observing, taking in what’s God is and has already been doing before ploughing boldly ahead.
So I’m drawn these days to something like the wisdom of percolation, to recognizing and valuing that if we people work hard for years beneath the shadows, then surely God needs time to work, too. That perhaps we’ve got it all wrong: time is not against us, but for us, in that it takes time to understand, to learn, and to grow, and God wants us to have and to hold and to enjoy that time with God. I would and can afford that time to my students, but it’s a bit more difficult when it comes to me.
But maybe, just maybe, I’m right where I need to be.
I can’t tell you how often these days my husband and I are brimming with joy as parents.
Every time our daughter smiles and giggles and babbles her sweet sounds, life–nearly four years of it together now–just doesn’t get any better. Indeed, when I look at photos like this, Lucia’s face pink and scarred from laying her cheeks in stomach acid night after night when she couldn’t tolerate her feed, I think just how far we’ve come.
But a lot of things have also stayed the same.
Lucia still needs a tube to feed during the day and overnight, she’s still prone to seizures, she’s having trouble breathing, and she’s scheduled for major surgery in 2018. Our family equilibrium isn’t typical, and it doesn’t come from a respite from medical complications, technological procedures, or nursing interventions. Rather, it is those very things and an incredibly spirited three-year old that often makes life so much fuller, grander, and more beautiful than we ever could have imagined. Ever since we got private duty nursing through Medicaid when Lucia was about a year and half old, not only her cheeks, but her lungs, her digestion, her joints, her nutrition, and her mood have all shown such growth.
In this season of thanks, we have so much to be thankful for.
And I can’t help but think about how the spirit of this Senate tax bill seems so out of sorts with this week’s cherished American tradition. They call it Thanksgiving, because it was one of the Pilgrims’ first corporate acts of giving thanks for the good harvest. And while the stories we tell our children about the miraculous sharing of a feast between the white colonialists and the Indians may not be entirely accurate, they reflect an idealized notion that thanks must be freely given and cannot be readily given unless there is peace, justice, and provision.
You give to my family every time you make a phone call to your senator and tell them that people with disabilities shouldn’t suffer so that this country can save money. You give to my family when you pay your taxes and portions of those taxes go to programs like Medicaid that support nursing care, medical coverage, and medical equipment for kids like Lucia who are deemed too costly by private providers. And you give to families, especially those who find themselves in need this season, when you make clear that we cannot celebrate tax cuts when the poor get poorer and the hungry go hungrier.
If this truly is not just the season of giving thanks but also of giving, then let us gather together to make not just my cup, but every cup of every parent in this country overflow with gladness. None of our journeys are typical, but that’s what makes this country so great. Let’s not let a few hard-hearted people in Washington make it otherwise, especially on Thanksgiving.
And from the bottom of my heart, for all your phone calls, prayers, and support,
It was worn, tested, tried, and true. I repeated it probably millions of times over those earlier years when I first fell in love with the spiritual discipline of silence, of making room for God to move in ways that involved only clearing my mind, cultivating a space, and ushering in a countercultural reverence for stopping when the world refused to stand still.
Perhaps that’s why I’ve never really been able to get my mind around this word, why I’m not so good at abiding, or even praying about it.
I confess that recently my abiding has become dusty and decrepit, just like my centering prayer practice, beholden and bent to the cluttering of my life in which I’ve allowed little space for anything other than tasks and work and running–little space for silence, breath, let alone God.
And yet, in the recesses of my soul, God whispers more countercultural wisdom–that more can even be done with less rigor and muscle and strength. That, just as it’s been in the deliciousness of these last few mornings, when I’ve sat idle, letting the waking silence wash over me, I’ve felt most refreshed, most awake, most alive.
There’s this mystery about life with God, how when we resort to doing wholly nothing, that nothingness becomes holy in its luxury and extravagance, a sacrifice, an intention, a heartiness that can’t be achieved or earned and is yet, so much purer and better and good than all my blustery days.And that openness gives life and purpose and wisdom to our work and our justice and our advocacy–it exceeds us, because it so importantly comes for God and not from us.
Simply put, the welfare of our nation is hardly improved by an assault on the most vulnerable. And if this is the American way, our country will soon be defined not by its dreams and its opportunities, but by its exclusion of those in need.
Yesterday, my daughter and I struggled to get around in a crowded place–I had to get out to push shopping carts out of the handicap parking space (good thing I could even do so) and I struggled to push her wheelchair through a sea of tight twists and turns. Few people moved their chairs, and as we endured looks of disgust, glances of pity, and the fundamental unwelcome of barriers to entry, movement, and accommodation, my eyes filled with tears. As I sat down next to Lucia, I took her face in my hands and kissed her. I whispered in her ear, “They don’t know how special you are, but I do, and I’m so glad.”
You, politicians, cannot take our joy, but you are playing hard and fast with our very lives. As you go to vote this week, may we as the people continue to remind you that your task is actually to protect the weak, guard the sick, provide for the poor, rather than trade them for your own political gain. You are not doing right by my daughter and my family and something much more basic than our joy–her human dignity–is what’s at stake.
What will you do to make this world more inclusive? To give my daughter more opportunities and grant our family more dreams? Or will you continue to deny her the basic healthcare she needs to live her life? Will you not even give her that human dignity?
Take your cue from families like ours. With everything we’ve been through, we never give up on one another. Don’t you dare give up on us.
It was an ordinary, sunny, Saturday morning when I crept downstairs into Lucia’s room to dismiss the night nurse. “It was a beautiful night,” one of Lucia’s nurses, Viktoriya, purred in her thick, Ukrainian accent, flashing a wide smile, gesturing toward Lucia, still sound asleep in her bed.
I smiled, too, and sighed in relief.
Lucia hadn’t been having “beautiful nights” as of late: for almost a year now, she’d been screaming and crying out in pain in the wee hours of the morning and as she was just waking up. The crying was so extreme that the nurses and even we, her parents, couldn’t comfort her. Finally, we’d figured out that she was experiencing muscle spasms and cramps because especially in her sleep, she can’t move purposefully, so a low dose of Valium had recently been providing some relief.
But with Viktoriya (who mind you was a doctor in Ukraine), Lucia often had “beautiful nights,” nights that Viktoriya never took credit for, but rather rejoiced in innocently, as one would a gift. And yet, we knew there was something special about Viktoriya, about the meticulousness of the care she gave, the extra knowledge she possessed about the medications Lucia was on and their interactions, even the way she played with Lucia, offering her therapy when she’d wake up early in the mornings.
As we neared the front door and we talked about the pulse oxygen machine–the pediatrician had asked to get the alarm rates to make sure Medicaid would approve its rental for the coming year–Viktoriya detailed with precision the attention she paid to Lucia’s heart rate. “You see, when her heart rate starts to climb, I can see she’s getting uncomfortable, so I do not wait for her to cry,” she said, “I turn her.” And she motioned. “I turn her from side to side all night and she never wake up,” she said cheerfully. “She sleep perfectly just like that.”
Even as I write these lines, I am in awe.
In awe of the devotion and care my daughter receives as not only she, but my husband and I all sleep through the night, all the while a nurse keeping watch, anticipating and aiding Lucia to find safety and comfort and rest. It’s just no small thing that in a world where life is so difficult for Lucia, where at night she faces seizures and breathing and pain, a nurse not only keeps watch for the big things, but guards her sleep, attentive to her every desire, a desire even to move.
As Viktoriya left that morning, I scribbled a post on Facebook, letting my little world know what she’d done and been doing for us, and why Medicaid has been such a boon, a comfort, a watchman for our Lucia and for our lives.
I did this before I knew Medicaid was about to come under threat yet again. I did this before I knew I’d begin losing sleep again not because of Lucia’s medical conditions but because of the care that may not be there in years, months, or weeks.
How I feel about Medicaid is how I feel about Viktoryia and so many of the nurses who have come into our lives–they are a gift. We can’t possibly pay for the healthcare that Lucia would need to live and that in itself is frightening and humbling. Yet the state and the federal government give us the support we need to live our lives as a thriving, joyful family, not just of 3, but of 9.
That’s about how many nurses, plus two parents, it currently takes to provide Lucia the round-the-clock care she needs to make it through the day. Or maybe it’s more like 16–that’s the addition of the five specialists that Lucia sees on a regular basis, her medical care that Medicaid, too, helps support. Or maybe it’s more like 20–that’s her therapists and her teacher at school, a special needs school where Medicaid helps supply equipment, her Medicaid-supplied nurse makes it possible to attend, and Lucia gets great education and therapy.
I could go on. I know the numbers are much higher still–it’s you, millions of people who pay taxes and the government, that help support families like ours, that make it possible for Viktoriya to play watchman at night so Lucia doesn’t seize uncontrollably, so she doesn’t wake up crying in pain, and so her parents don’t have to hold vigil night after night as they struggle to work and to care for her. It turns out, I’m not just in awe of Viktoriya, but the abundance we have received through Medicaid, which is in no small part thanks to all of you.
Whether it was the clergy in full vestments, arms linked facing down gun-wielding white supremacists or the torch-bearers chanting anti-semitic threats, it is abundantly clear that theology is not neutral in 21st century America. And yet, in the wake of Charlottesville, many Christians have responded with opaque calls to unity and appeals to people of faith to “tear down the racial and cultural barriers that divide us.”
At first I thought such statements offended me merely as a cultural anthropologist.
You see, while it is powerful and poignant to condemn discrimination and racism, it seems a problematically ethnocentric, if not a positively white-privileged perspective to blatantly condemn “the racial and cultural barriers that divide us.”
Whose culture, whose race is dividing us? Perhaps it seems like mere semantics, but when Christians posit that culture and race are problems that breed division, that they are the very evils that need to be stamped out, we reveal that our calls to unity run dangerously close to the rhetoric of those who rallied in Charlottesville last weekend (even if that was not the intent).
Even though race is a social construct, we do see color and it has socially and politically relevant power and effects that especially white Americans must grapple with rather than ignore. The creative cultures that have emerged from communities of struggle and resistance among people of color in America are not barriers that divide us but rich resources to teach us about what America can and should become.
Not only do we have to choose our words carefully from an anthropological point of view, but we have to do so because the ministry and the integrity of Jesus Christ is at stake here. Countless Christians have boldly quoted Galatians 3:28 in the face of racial division: “There is neither Jew nor Gentile, slave nor free, nor is there male or female, for you are all one in Jesus Christ.” But Paul uses this passage to argue that all are liberated from the law and therefore, we do not need to become like one another to be in Christ and receive the gifts of the Holy Spirit; rather, in Christ, we can live as one with those who are radically different from us.
Indeed, we often forget that Jesus came into a culturally pluralistic world and honored the cultural practices in communities and peoples who were different from him, while preaching a gospel that sought to unify. There are certainly passages in the Bible that also justify slavery, genocide, and division, but when we look at the whole of God’s ministry arose history and in Jesus Christ and the Holy Spirit, I believe we do see that redemptive reconciliation does not damn culture, difference, and the sacredness of varied human lives, but the ways in which we human beings often instrumentalize these differences as division.
There’s nothing theologically unsound about unity, but unity that obliterates, objectifies, and undermines difference falls short of the vision God has for the fullness of humanity in Jesus Christ. Unity that maintains inequitable power structures is false and faithless. And unity that fails to listen and value the struggles of people of color in America is not only anthropologically unsound but theologically dismissive.
Of course, there’s so much more to read and do. But at the very least, let’s check ourselves from parading around platitudes about unity at the expense of diversity, especially in the name of Christ. Christians have got to stand for more than that. We owe it to one another and especially to Jesus.