Why healthcare is about human dignity

It’s a new bill (this Graham-Cassidy repeal bill), but the same, old story.

Curb healthcare to the poorest, the sickest, the oldest, the neediest, the youngest, and the disabled to cut costs.  But without healthcare, without Medicaid,  not only will costs soar, most importantly, real people will suffer.  I think of my own family–without private duty nursing provided by Medicaid, especially those overnights–we’ll surely be in the emergency room with our medically fragile child far more often.  If Medicaid is removed and we’re forced to rely on our private insurance, even if we run through our savings, we’ll still seek healthcare for our daughter, and we’ll continue to struggle to care for her at home (which is why Medicaid exists), because that’s what families do.

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.”

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More happy whispers between Lucia and her dad.

As I wrote about recently, no matter how hard they try, no politician nor party nor hospital nor inhospitality can ever take away our family’s joy.  But as I look around the already trying, precarious nature of Lucia’s fragile life, I sure wonder why they try so hard–why they target families for whom society is already so unkind, for whom another year of life is hardly certain, families who know all too well pain and fear and heartache and who now face even more fear and uncertainty–financial, medical, and even physical.

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.

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A Medicaid Story

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.

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Cuddles with my girl.

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.

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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.

But today, I am also weary.  Weary of the proposed cuts to Medicaid in this newest bill in the Senate, and weary of the plan to make savings from cutting people from healthcare who need it most.

Please join me in bombarding Congress with stories of gratefulness about children like Lucia and the gift of Medicaid by calling your Senators over the next few days.  Please share our story and Viktoriya’s story.  Please tell them that Medicaid is about people and long nights and “beautiful nights” and families like ours.  Please tell them what Medicaid has done for us.  And please tell them how thankful and in awe we are of the people who have provided for our daughter.

Psalm 130

1 Out of the depths I cry to you, O Lord
2   Lord, hear my voice!
Let your ears be attentive
   to the voice of my supplications! 


3 If you, O Lord, should mark iniquities,
   Lord, who could stand? 
4 But there is forgiveness with you,
   so that you may be revered. 


5 I wait for the Lord, my soul waits,
   and in his word I hope; 
6 my soul waits for the Lord
   more than those who watch for the morning,
   more than those who watch for the morning. 


7 O Israel, hope in the Lord!
   For with the Lord there is steadfast love,
   and with him is great power to redeem. 
8 It is he who will redeem Israel
   from all its iniquities.

Why Christian calls for unity in the wake of Charlottesville may be both racist and theologically unsound

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.

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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.

If you’re a Christian, especially a white Christian like me, seeking healing, reconciliation, and unity, I recommend you read the PCUSA’s statement on “Facing Racism,” adopted in 1999 by the General Assembly as a policy document to guide the pursuit of racial justice.  Or read this exegetical lecture on Acts, where Princeton Seminary Professor Eric Baretto powerfully describes how differences are gifts from God.  You might check out my post on “Embracing Difference as a Spiritual Discipline” and consider the challenge in a theology where we recognize and affirm that although we belong to God, God does not belong to us.  And check out Christina Cleveland’s “Syllabus for White People to Educate Themselves.”

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.

 

Why they can’t take our joy

A few weeks ago a former student emailed to update me on her summer.  “How’ve you been?”  she asked spiritedly.  “I’ve spent the summer distracted by healthcare,” was the confessional, somber, and bitter beginning of my reply.

Indeed, in the last few months, alongside the very real threat of losing the ACA, Lucia’s Medicaid benefits, and healthcare for millions of Americans, there’s also been the more subtle feeling of frustration that this fight has also taken its toll on my academic and pastoral passions, reduced me to someone who wasn’t producing or creating so much as maintaining vigilance, waiting on others’ words and others’ actions–merely responding.

And I hate being in response mode.

I, like so many Americans, truly despise the discipline of waiting on anybody or anything–I’m even kind of lousy at waiting on God.

When there’ve been great gushes of joy as there are in everyday life alongside Lucia, I felt resentful that they still felt tinged by a foreboding, ominous fear.  How can you mess around with joy when you feel such aching fear and trembling, I’d cringe.  And then I’d smart because I’d be angry that 13 men in a private room were even threatening to take my joy from me.  How dare they do that?

This summer has been filled with ups and downs, victory and solace punctuated by deep uncertainty and angst—so many bills, so many promises, a little hope, very little peace.  So even the things that normally come naturally to me–forging ahead with bravery and decision–have been called into question, fretted and flummoxed by the helplessness and fatigue I’ve felt.  I’ve found that it’s easy to be brave when it’s just you, but it’s much harder with someone else depending on you.  Or when you’re made to feel that bravery is foolish or may count for little in the end.

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Speaking at the RunRAllWomen Rally on Friday night.  Photo by Evan Schneider.

But what has made all the difference in the last few weeks, through the wise spiritual counsel of trusted friends, is to discover that bravery is possible even in the face of tremendous fear and uncertainty, because joy is resilient, defiant, and knows no boundaries.  This is the message I shared last night about our life with Lucia at a rally for equitable healthcare–that joy may be an unlikely home for advocacy but it’s effective because it’s genuine and human and resounding.  That being human means sharing vulnerability and fragility but it can also mean finding joy in the most unlikely of circumstances and working together for change.

In these last couple of weeks, even before the Republicans voted against the repeal of the ACA, even before so many of you stood up for the needs of those on Medicaid (THANK YOU!!!), I realized that even if they take away Lucia’s healthcare and they deem her life of little value, our family will still have our joy in each other and in God, and we will rise in the face of all of it.  We will go on and create and make beauty from ashes because that’s what we do, and nobody can take that transformative joy that we’ve found in Lucia, one another, and in God away from us.  It doesn’t make any of it okay, of course–the assault on the healthcare of the most vulnerable in this country.  It almost makes it worse that in a world filled with real life challenges of health and life and death for kids like Lucia, it could be something manmade that’s the death of them.  But it reminds me that I’m not waiting on our government’s bills or decrees or approval to live my life–I never was.  Instead, I’m happily and graciously bound to a family and to a God and to people who love us and whose love is real and here and stable.

Of course, the one problem is that however lovely these words, they are tinged with privilege.  Many people won’t be able to lean on family or something as seemingly ethereal like creativity, but practically translated as amazing university employment.  People will be so hurt and scarred by revoking healthcare and Medicaid and those the most hurt won’t be me or my family but those whose dignity has not just recently come under assault but rather has long been denied by the classist, sexist, ableist, racist undertones of America’s unrelenting “greatness.”

But I do think it’s something–it’s certainly not nothing–to feel joy amidst fear and live to tell about it.  Indeed, this is what I find defying and powerful about so many saints of the church, champions for justice, and seemingly ordinary people who have gone before me.  Please, please don’t hear me wrong.  I’m not giving up, but rather recalibrating our fight.  I’m suggesting that we bravely, boldly live our joy-soaked lives even, perhaps especially in the face of such an assault.  Taking pleasure and joy in our humble lives becomes an act of resistance in itself, a luxury that many struggle to find.

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Our family celebrating at my sister’s installation service.  

And this is precisely why we must not measure ourselves by human standards because we see human standards faltering in our midst everyday.  I’m reminded these days that they can’t take our joy because our lives never belonged to them or even to us but to God.  And same thing with that joy.  It’s roots are deeper, wider, grander than many of these legislators have ever encountered.  May they feel its fury, its vibrance, its resilience and may they be led beyond fear, as I have, to seek justice.

 

Why we need to learn to see differently

It’s the stunning yet simple basis of all anthropological knowledge, really–this truism that we’re not all the same, we’re different.

Take my daughter, for instance.  Whereas most people get up out of bed every morning and walk, she giggles or cries until we come get her.  Whereas most kids her age start to brush their own teeth, put their own backpack on, eat breakfast through their mouth and head to school, we do the brushing, Lucia’s backpack hangs on her wheelchair, and she eats her meals through a feeding tube that’s attached to her stomach (she eats a lot of her food through the same tube overnight, which is actually pretty efficient!).

But even anthropologists who believe in the wisdom of learning from others are only human.  Because we, like everyone, only have one primary perspective, one pair of eyes and ears through which we experience the world, we still tend to succumb to ethnocentrism–the belief that not only are people who aren’t like us weird and different, they’re less than.

Lucia gets that a lot.

People presume that because she rides through life in a wheelchair or because she gets her feeds through a tube and perhaps most especially because her brain is different that all this comparatively limited functionality that she has amounts to a pretty pitiful and dull, if not brutal life.  They ask me if she will ever do certain things like walk or talk or eat, if she will “be like that” forever, and when I tell them she likely won’t walk or talk or eat in typical ways, they frown and shake their head or grimace.

But what if I told you that some of the very things that make you skeptical about her quality of life, like that wheelchair or that feeding tube, are the things that bring her mobility, joy, and comfort?  Lucia eats through a feeding tube because her body can’t process food orally without it heading into her lungs, which caused numerous scary and painful bouts of pneumonia until we got that tube.  Lucia rides in a wheelchair because that enables her to feel the wind in her hair, to head outside and to school, when otherwise she might be in the house all day.

What if I told you that a lot of the limits placed on Lucia don’t come from her differences but from the way we perceive her differences and from the supports and benefits that we deny her especially because she’s different from us?  When I invite my students to view the world anthropologically, through the lens of others, especially people with disabilities, it kind of blows their minds.  The fact that we able-bodied people are part of the problem for people with disabilities never really occurred to them.  It never occurred to them that subtly viewing someone else as less than and placing limits on their lives, compelling them to be someone they’re not, live in a society that’s only made for the able-bodied, and then wonder why they’re not thriving is discrimination, not liberation.  

This ethnocentric way of viewing people with disabilities as less than is called ableism and it’s not just endemic in American society and everyday interactions across differences, it’s front and center in this debate on healthcare.  Maybe you didn’t see it, because your ableism kept you from the truth, but denying life-giving services to people who are different on the basis of their differences–i.e. cutting Medicaid for people for who literally need it to live their daily lives–yeah, that’s discrimination.  Or reserving healthcare only for those whose bodies are “normal,” who don’t have preexisting conditions, or denying hospital services to those who are inevitably going to have to use the hospital because they’re made different and they’re living in a world that’s downright inhospitable to their differences–that’s textbook ableism.

But we all saw Donald Trump begin his campaign by mocking a reporter with disabilities.  We have all seen headlines that compare that same President who mocked someone with disabilities to people with mental illness.  We’ve heard about people with disabilities staging protests in the offices of Senators and being dragged out of their wheelchairs by security on Capitol Hill.

Open your eyes.

It’s not people with disabilities who need to make more concessions to the society that already demeans their existence, down to their very lives and whether they’re worth living–it’s you and me.  We all need to change our way of seeing our fellow human beings, our fellow Americans, as pitiful and less than and deficient.  What is deficient are our healthcare proposals that purport to deny people coverage based on innate differences.  What is deficient is our rhetoric that excludes and codifies people who we don’t want to accept or don’t understand.  What is deficient is a country that seeks to find its greatness at the expense of its very citizens.

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Lucia a home wearing a cap during her portable seizure study this past week.  My photo.

Please don’t shake your head or frown or grimace at my daughter’s quality of life.  Instead, please pick up the phone and call your Senator and shake your fist at them for failing to grant the necessary supports that make her different life possible.  Become an unlikely advocate and listen to the concerns of those who are different from you not just because they’re different but because we’re all human.

After all, the root of anthropology is anthropos, human being.  Providing good healthcare comes down to the recognition that we are all human beings but that we’ve constructed an able-bodied world that’s only fit for some.

So don’t cut my daughter’s Medicaid because she’s different.  Affirm the value of her life by keeping it.  Let’s keep the ACA and its supports for all kinds of people.  Let’s keep healthcare that’s working for people like you and me and people like my daughter.

 

Virtual Coffee Date

If we were sitting together this morning having coffee I would tell you that life has lent its typical roller coaster as of late (seizure for Lucia- she’s doing great now, though; running over a deer carcass with my car for me-it still smells; no bus for Lucia’s first day back to summer school on Monday- a friend came to the rescue; nurse pulled out Lucia’s tube on Thursday morning-ugh; and we lost power on Thursday night during the storm-got it back early Friday morning)… and yet, as you see, with God’s help, we’re finding adventure in adversity and somehow holding it together!

Summer has been so full of unexpected joys–luxurious and productive staycation for us in June, thrilling aquatherapy sessions for Lucia covered by insurance and rides to and fro covered by Medicaid–even as it’s packed with challenges, too–I sent my book manuscript off to the editor in early June, have been teaching summer school at Princeton since July, and start a new job at the seminary in the fall.  All this while the healthcare wars rage on Capitol Hill and we worry as Lucia’s care seems to hang in the balance.

If I seem distracted, unable to focus even in the midst of a sentence, it’s because I am.

But I’m trying to trust that (with the exception of maybe the healthcare battle, deer carcass, and tube being pulled out) there’s a real abundance, blessing, and excess in the way my cup is brimming over, inviting me to embrace this season in its chaotic fullness and to testify to what God’s doing with a life and a heart fittingly overflowing with joy.

 

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If this isn’t joy, I don’t know what is!? Lucia with her father.  My photo.

So that’s what I’m trying to do (more on how that later), not living a life in response to what others are doing but a life that responds to what God is clearly doing, in a big way in my life, my family’s life, and in this world.

Still, if we were talking this morning, I’d look you in the eye and thank you but urge you to keep making those phone calls on behalf of people who are on Medicaid, who need assurance that health care will be there, not just for the healthy but for the sick, the poor, and the needy.  I’ve put some links below that I’ve found helpful and important in wading through the excess of information out there.  I did a podcast on Medicaid that I hope you’ll share with family and friends who want to understand its benefits and even as I still feel that families with people with disabilities face such an uphill battle in terms of understanding and coverage, I am thankful for all the support and hopeful that concerned citizens are making their voices heard.

I was reading Margaret Mead for one of my seminary courses yesterday: I sat there for like two full hours just reading and devouring–it was incredible, and this quote of hers that has been on my mind for weeks sprung to my attention.  I leave it with you in hopes that you may believe that we can change the world, that God is with us even when we forget it, and that joy is abundant and ample and just as human as fear and defeat!

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Some links for you:

 

Please call your senators TODAY

I’m over at Huffpost this morning with one final advocacy piece before the AHCA vote this week.  If you’ve been reading my posts over the last few months, you know how discouraged and concerned I am about the proposed Medicaid cuts and how they would affect our family and families like others, children, and the elderly.  The CBO score for this bill just came out and it projects that under it 22 million people would lose their insurance before 2026!

But Senators are listening to their constituents.

Both Dean Heller of Nevada and Susan Collins of Maine have recently announced that they will not support the bill!  If you have a Republican Senator please call them everyday this week until the vote to ask them to vote NO on the AHCA, and you’re welcome to use our story!  If you’re from Alaska, West Virginia, Maine, Nevada, Arizona, Colorado, Ohio, Pennsylvania, Louisiana, or Arkansas, these are key states where your senators remain undecided and you should definitely call and there are daily call scripts for those states available here.  If you have Democratic Senators, make sure they are speaking out against the bill and willing to use any means to block it.  But the best thing you can do is reach out to friends and family in the ten states above and ask them to call!

One of the beauties of this blog is that I don’t know all of you personally but I feel like I’ve come to know you over the years.  And I’d love to hear from you.  Please leave a comment in the comment section and let me know where you’re from and who you’ve called.

And please head over to Huffpost when you have a chance and read my latest “My Baby Wasn’t Born Healthy and Her Life Still Matters.”

And thank you for all your support!

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Lucia giggles in her activity chair provided by Medicaid.  My photo.

 

Why I’m Worried: An Inhospitable Present for People with Disabilities

I remember the box that the nurse from Medicaid checked when she came to evaluate Lucia–it read something like “qualifies for institutionalized level of nursing/medical care.”  She’d been so empathic and caring, so visibly at ease seeing and talking about a child that was on a feeding tube and yet puked the contents of her stomach uncontrollably while we talked in my dining room.  But when she left my heart skipped a beat–did she check that box because she thought Lucia belonged in an institution?  I thought she’d been there to process Lucia’s Medicaid.  Sure no one was going to take our child away?

When we spoke over the phone a few days later she explained that she had to check that box for Lucia to qualify for the highest level of nursing care.  She explained to me that while many years ago kids like Lucia couldn’t be cared for in their homes, today modern technology, skilled in-home nursing care, and the Managed Long Term Special Services (MLTSS) Medicaid program in New Jersey were trying to do just that–support families with children with special needs to allow them to care for their children at home.

Looking back I don’t remember being particularly fazed by the severity of Lucia’s medical needs.  Growing up with my own health problems, a twin sister with asthma and respiratory problems, and a mother with multiple sclerosis (who is also a nurse!), I think I learned that while health challenges were part of life they didn’t prevent a person from being a person.  We had good medical care and my parents were able to provide what we needed to thrive.  Therefore, for my husband and I, when it came to Lucia, so much of that first year and a half was just wading through the newness of parenthood alongside the advent of seizures, abnormal MRIs, and feeding tubes without much distinction.  We were coping and surviving with rare moments that glare through the blur with clarity and poignancy–the long nights of shrieking as we weaned our poor baby off of narcotics; the morning she woke up with her head and her eyes glued permanently to that the left and because she had special needs the ER doctors rather dismissively sent us home saying she probably had a cold; or the night a month later when I nursed her for the very last time in the glimmer of hospital monitors because that onset of brain damage (what had really sent us to the ER) had caused her to lose the ability to feed by mouth.

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Lucia wakes up from a recent surgery in the hospital.  All photos mine.

Yet those moments, as ingrained as they are in my memory, did not so much smack of worry and fear as heartache and pain.  You see, by God’s grace my husband and I are not much of worriers.  We’re eminently logical and practical people, people who sort of spring into action and competency when faced with crisis–as pained and bleary-eyed as any first-time parents may have been.  We found this way to treasure those moments, laced with sorrow, with our precious child, precisely because the future was always so unknown and held in suspense.  And when Lucia’s prognosis pointed to death in early childhood, it only made worry that much more the enemy of the present.  We had the present.  The luxury of worry was fleeting.

Fortunately you know there is so much more to the story.  Lucia is thriving today thanks to New Jersey Medicaid, loving family and friends, her own irrepressible spirit, great doctors at Children’s Hospital of Philadelphia, and God.

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Lucia on the porch with her mom and her aunt.

And yet, I’m more riddled with worry than I’ve ever been.  I’m more confused and angry and scared because everyday I know I’m waking up in a world where her life is not instinctively and supremely valued–rather her ways of life, costly though they may be, fall definitively at the bottom of a decisively immoral federal budget that sees fit to do without them.  As an intellectual and a person of faith, I really try to overcome these worries with logic and prayer, but they remain apparent, diffuse in the backdrop of our otherwise grace-soaked lives, hopefully dormant but palpably there.

This is my new present and it makes me sick.

I’m sick that although my child is now even miraculously taking small spoonfuls of puree at school by mouth (go Lucia!), I’m wondering whether her special needs public school and feeding therapy will be on the chopping block next.  I rejoice that Lucia’s God-given companion, her nurse Sylvia, has been with us for over a year and a half, but I worry how I will work when Lucia’s Medicaid gets cut, how Lucia will ride the bus to school or eat through her tube without Sylvia, or how my husband and I will ever sleep without a nurse in our house to monitor Lucia’s seizures, vitals, oxygen levels, feeds, and neurological pain.  I’m worried because in the back of my mind I wonder if someday in the absence of Medicaid I may not longer be able to care for my own child, this precious, precious gift, because I actually can’t do it without in-home nurses and feeding pumps and pulse ox monitors and special education and therapy and seizure medication and durable medical equipment–all things that Medicaid provides.

Some friends along the way have insinuated that I’m being a bit dramatic here–that perhaps I should give Donald Trump, the Republicans, the AHCA, the budget negotiations more of a chance–perhaps I shouldn’t worry so much.  Perhaps, according to them, I have nothing to worry about.  But I can tell you this much: I didn’t worry for Lucia’s life or ours initially because those were so firmly and are so firmly in God’s hands.  The rarity of her genetic disease, the onset of her brain damage and consequences, and the wisdom and beauty that God had in making her are so simply beyond me.  But this politics and justice and being human stuff?  God’s charged us with that.  God’s charged us with preserving and caring for human life–all human lives–that’s ours to do.  And as long as people like my daughter are cast aside in some human mishandling of God’s charge to God’s stewards, I reserve the right to be very angry.  I reserve the right to be worried.  And I reserve the right to fight like hell to preserve her life, like any of you would your own child’s, and my ability as a parent to care for her in my own home.

You can tell me not to worry, but it makes me feel as though you are not really listening as I tell my story.  I learned how to live in the present a long, long time ago, and I’m telling you it’s become a downright inhospitable place for people with disabilities.  It’s a present deeply in need of a change.  Won’t you join me in being that change so none of us need worry about our children’s future?

Please call your members of Congress today to urge them to oppose Medicaid cuts in the President’s budget and call your Senators to urge them to vote against the AHCA and the proposed cuts for Medicaid.  Let them know that more than 80% of Medicaid’s budget goes to children with disabilities, poor children and the elderly; only 15% of Medicaid funding goes to healthcare for able-bodied adults.  You can find other great talking points to make your phone call here.

Where does disability come from?

I see the speculations and I hear the questions all the time.  Do children get autism from the environment?  Is Lucia the way she is because of something I ate during pregnancy? What is it that causes your child to be different?  These questions all hinge on the belief that maybe there was a way to prevent these diseases and disorders and syndromes.  And if we just knew more or were a bit more vigilant or worked harder, maybe we wouldn’t be left with autism or ALS or AGS (the genetic syndrome that makes my daughter different).  I probably shouldn’t touch these discussions with a ten foot pole.  They’re weighty and emotional and fraught; they’re not easy.

But all I know (and I want you to know) is, I don’t feel like I’ve been left with a syndrome–I’ve been gifted a child.  

And the world is so full of blame and blame-shifting already.  In fact, one of my students wrote a pretty wise paper this semester in which she claimed that most theories of disability are actually so intent on shifting blame (from societies to individuals to the environment, etc.) that they fail to take account of the people in front of them.

I’m somewhat ashamed to admit there was some relief in learning that Lucia’s diagnosis was genetic.  There was practically nothing we could have done, short of not giving birth to her, to prevent the manifestation of AGS in her being.  There, I thought, now no one could look around and blame me for her disability.  I neglected, however, to realize that the revelation of a genetic cause for AGS could make the search for a cure just that much more fervent and earnest.  I neglected to realize that control is yet another human propensity and curing a wildly passionate end.

As much as we human beings are driven toward science and explanations, we’re also driven toward progress, perfection, and efficiency.  And although those values may get us to an eventual cure or eradication of diseases like AGS, they won’t help you or I love or learn from Lucia; they likely won’t help us further understand our shared connection and humanity.  You see, I’m not against science, not in the least, but as a social scientist, I heartily object to ideologies that dismiss difference, simplify humanity, and make progress an idol for the privileged.  I notice that as human beings we struggle so fitfully to hold in tension our acceptance of one another’s differences and our desire to change the world and others in it.

Several months ago I sat with a dear friend of mine who has a child with autism and she asked a striking, heartfelt question.  “Do you think,” she asked respectfully and therefore, trepidatiously, “that there’s some sort of freedom in the way that you all have been able to release Lucia from all of the developmental milestones and standards because of the severity of her disability?”

“Oh absolutely,” I replied.  I went onto talk about how instructive this shift has been for my husband and I, enabling us to emphatically celebrate and truly love Lucia for who she is, not for what she does.   And my friend went onto tearfully describe how crippling the pressure of fighting for her child’s every opportunity, providing for her child’s therapies, and keeping up with all the internal and external expectations had become for she and her husband.  And her tears broke my heart.

“But wait a minute,” I stammered, also trepidatiously because her experience is not mine and mine not hers. “If the worst case scenario comes true–if your daughter struggles beyond belief in school and therapies ‘fail’ and she ends up dependent on you and then her sister or your family long after you’re gone, I imagine you will always feel as if you hadn’t done enough, right?”  She nodded and I felt a little horrible for even forcing her to face her worst fears.

“But if she goes onto to defy all expectations, to succeed in school, to become independent, go to college, marry, all the typical things?  I doubt you would credit yourselves, right?  Surely you would chock all those things up to luck or providence.”  And when she nodded, I’m afraid I may have very in-elegenatly replied something like,

“Well, that’s f***ed up.”

I didn’t mean it in the sense that my friend’s attitude toward herself or her child is so remiss and corrupt but just that the feeling that kids with disabilities need to be like everybody else to be successful and that their parents are so complicit in that makes the burden pretty impossible to bear.  And when we ask, even innocently where children with disabilities come from and who is to blame for their existence, we often paint them as something other than human, some aberration from humanity.  But people with disabilities will always be with us, and they are part of a shared humanity, reminding all of us and teaching us just what it means to be human no matter how much we fight that truth.

Today my husband and I rest in the present and embrace who Lucia is.  While others fight aggressively for a cure for Lucia and others with her syndrome, we know that is not our battle; in fact, we reject the metaphor of a battle altogether, because we can’t help but notice that what the world wants and needs and strives for often seem the very opposite of all Lucia has taught us and has to give.  Perhaps they’re not antithetical to some–this penchant for curing and this embrace of life in all its diversity–but I can’t help but think that when our understanding of disability tends toward a shifting of blame, we’ve audaciously and ironically wrested control away from the very people who might be able to teach us something about it.  I can’t help but think that in my three humble years of mothering Lucia, I haven’t found her so much in need of changing as I’ve found myself in need of a different, better way of experiencing the world.  I can’t help but think that however Lucia and your child and my friend’s child got to this earth, I’m so glad that they’re here.

And that if I’m to blame (which I most certainly am in part)–well frankly, I’m humbled and thankful and forever the better for it.

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Lucia and mama on a recent hike.  My photo.

Nanning

For those of you missing the China posts, I miss China, too!  I wrote a poem about it:

It is a spring morning in central Jersey.

And yet, when I emerge from my car in the parking garage, construction whirling in the distance, I am distinctly reminded whereby the crispness of this air, the particular squeakiness of these birds, and the unmistakable mix of blacktop and freshness of the same season in a city in South China.

Footbridge
One of the footbridges in South Lake park.  All photos by Evan Schneider.

Said city holds no particular place in the Chinese imaginary when it comes to urban notables; in fact, it conjures adjectives like “backwards” and “primitive” from the mouths of cabbies across China.  But five years removed from my life there and cobbled sidewalks encased from endless traffic by massive palm fronds, I wonder if quaint is an adjective that one can put toward a city of seven million for which I am undeniably, yet foolishly homesick.

I recall how dodging the passersby dotting the sidewalk, I would sprint on a morning such as this, down to South Lake, and feel it my quiet oasis.  In China, I learned the comfort of never being alone.

Footbridge with people.jpg
The never desolate footbridge!

Despite the traffic that roared across the highway carving the lake in two and the never desolate state of the footbridge, pretending to climb but nay drudge up it in the dank humidity was my respite, my triumph.

Alongside the elderly people swatting their arms and strolling the banks or the young men in track suits with more ambition than athleticism, I felt deliciously inconspicuous, enfolded in the lush, yet urban landscape.

South Lake Park
South Lake Park, Guangxi, Nanning.

When I long for China, I like to think it’s not merely as a vagrant or a tourist but as an adherent and an old friend.

You see in China, I learned the distinct pleasure of anonymity alongside the crowded comfort of never being alone.  There’s something pleasurable in recollecting that those runs along South Lake were never quite my own but belong dutifully and contentedly to the city they call Nanning.