Tag Archives: disability

A life of gratitude

Over a year and a half ago now, we lost a wonderful man.  He was a deacon at our church, a playful, yet wise soul, and he happened to be the husband of the pastor I work with at church.  A month or so after he died the family sent out thank you notes with his photo and the caption read, “Just another day in paradise.”

That phrase was Pete’s response more often than not to the casual question, “how are you doing today?” It was maybe 20% conceit and 80% truth–you see, Pete was suffering from Multiple Sclerosis.  He’d needed to ride in a wheelchair, and he had lots of body parts that didn’t work the way they once did after many years of living with the disease.

But if you got Pete talking on the subject of “paradise,” he’d almost always follow that up with something about his life being “an embarrassment of riches,” and that was something I know he meant with his whole heart.  Even from his vantage point in his wheelchair, his body failing, Pete could see that what was important, even lavish was his own very life and the people in it, and they made that life worth living every single day.

Pete
Pete, rolling through life with style.

Around the time our daughter Lucia was diagnosed with a terminal, genetic, progressive disease of the brain, my husband heard a radio broadcast about other kids with a similar rare disease, to which parents mentioned two lifestyle options–you can either fight like hell seeking a cure, they encouraged, or you can sit in a corner and mourn this terrible disease.

But if you’re any reader of this blog, you know that my husband and I have tried to make way for at least a third option, one that kind of reminds me of how Pete lived his life.  Because, although to some extent everyday is a struggle with and for our daughter Lucia, everyday it also somehow just as it should be.  Pete’s perspective on an “embarrassment of riches” truly resonates now that we’ve had four years with a daughter we were never guaranteed.  And that perspective, on the days where she’s struggling to keep any food down or inexplicably crying in pain, makes all the difference.

Cinderella
Lucia, also rolls through life with style.                                                                                                   Pictured here in her Cinderella Halloween costume that her nana made for her.

I guess the lifestyle philosophy I’ve learned from Pete, my life, my daughter and others around me goes something like this–you either wake up convinced that the world is not as it should be, or you trust that there’s some wisdom, some perspective, some peace to be found in acceptance of this precious life you’ve been given, and you go about living it not with resignation, but with gratitude.  And gratitude, somehow, makes everything whole.

That’s what I saw and learned when I interacted with Pete, that he wasn’t papering over the difficulties and playing Pollyanna, but that in his wrestling, he’d found his way to sincere gratitude and that gratitude permeated every corner of his life.  Someone noted the other day that even when I tell them about the difficult times with Lucia, I’m usually smiling.  How can that be true? they wondered.

Because life with Lucia is a gift, plain and simple.  And life with Pete was a gift, too.  

Even on the roughest days, I can’t help but see life lived with Lucia as “another day in paradise,” “an embarrassment of riches.”  It’s not trite, just true.  And just as Pete taught me, I try to share that life of gratitude with others.

You can find my colleague, Beth Scibienski’s book, Who is God When We Hurt? that chronicles her life with Pete, her caregiving, her faith, and her grief by clicking here.

Advertisements

The inequalities that bind

La frontera
US-Mexico border, Agua Prieta, Mexico/Douglas, Arizona, 2003.  My photo.

This week we’ve seen children confined to cages, heard their screams as they’re ripped from their parents and witnessed our president bend to public and political pressure to amend his callous “zero tolerance policy” at the border. Yet, thousands of migrant children remain separated from their families, and I keep wondering if we’ve learned anything from all this. The government has wanted us to see a chasm between those families at the border and our own. In place of what could be a common humanity, a desperate dare-we-say American-like doggedness to seek a better life for their persecuted families, Trump and his allies have offered fraud, smuggling, and criminal behavior as self-inflicted explanations for migrant families’ plight. So perhaps what we’ve been faced with this week is the hearty evidence that not all families, let alone all childhoods, are created equal in America…

But isn’t this something we already knew?

We know that being needy makes you vulnerable in America, but whereas teenagers marching for “black lives matter” are vilified for lives lost, the white teenage activists from Marjorie Stoneman Douglas High are praised for their activism.  It seems what we’re encountering is something even more pernicious than the inequalities themselves, rather the realization that not even all need is created equal.  Since the election, I have been desperately sharing my own story to keep the lives of families with children with disabilities, alongside the lives of so many other marginalized families, in view; however, it only recently occurred to me that by telling our story, I may be rendering further invisible families like the ones being turned away at our borders.

You see, while my family’s need for life-sustaining Medicaid for our medically fragile child elicits incredible sympathy, that’s largely because my daughter’s disability is often viewed as an underserved tragedy that has befallen a white, educated, hard-working, affluent, heterosexual couple. But while so many other families on Medicaid (especially families of color), equally needy to mine, are belittled for their poverty, chastised or blamed for the presumed neglect, fraud, or abuse that put them into the system in the first place, a common response to my family’s vulnerability is not just pity, but often, congratulation. We are heralded for our love and our sacrifice for our daughter. Meanwhile, the very nurses employed through Medicaid who tend to our daughter, monitoring her heart rate, seizures, and breathing overnight, are immigrants like those being turned away at the border. They work in unsteady employment for low wages, rarely receive healthcare, and they have either already left their children behind in their countries of origin in order to provide for them, or they leave their children in the care of others, so that my family can sleep at night.

These migrant families are part of what scholars have called the global chains of kinship and reproduction, stratified care work that elevates some families on the backs of others. If you think about it, certain groups of immigrants, children who are “rescued” through inter-country adoption or born through international surrogacy, are uplifted, generously welcomed into our borders and our citizenship, while the families they came from, foster mothers, surrogates, nannies, and other care workers, languish in the shadows, families already torn apart yet silently, incrementally, with little fanfare. Thus, the separation of families at the border is but a visible demonstration of the invisible borders we often perilously draw around our own family lives.

The myth of the modern family and this tireless invocation of the need for “family values” suggests that each family stands alone. Yet, in articulating my family’s story of need I’ve become aware of the ways we are uncomfortably and unevenly indebted to one another. I’d like to believe that with the outcry on social media and the political pressure brought by the public upon the administration’s immigration policies, a new kind of family values is emerging that does not deny, yet makes visible these inequalities and the families who have endured them in the pursuit of wellbeing and freedom.

But the challenge comes in both maintaining our common humanity and acknowledging the injustices that bind and separate us from one another. We cannot afford to look away, for it will cost us all our humanity. But we also cannot afford to go on living our fictional, solitary lives while asylum is being criminalized, need is being stigmatized, racialized, and vilified, and children with families are being abused and institutionalized.  My family, likely your family, needs these persecuted families, whether we choose to admit it or not.  If we cannot break the global chains of inequality, perhaps we can at least qualify and dignify the emotional labor that families like mine benefit from everyday.  We can refuse to participate in the politics that slander the need of some to elevate and fulfill the needs of others. We can turn away from pity and charity and toward justice, mercy, and grace.

And we can demand that America must do better by all of its families, especially those who have so painfully paid the price of vulnerability, so that others can thrive.

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.

IMG_1948
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.

21373351_707938436076712_5341048396742393856_n

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 the Church Needs People with Disabilities

 

science-tv-dr-who-daleks-cartoons-punch-magazine-birkett-1981-08-05-235
This is the cartoon on the front of my students’ syllabus!

Over the past five years or so, this blog has taken a massive shift in trajectory toward exploring the lives, needs, and gifts of people with disabilities, in China, in our local church, and through my own experience with my daughter.  (In fact, I’m realizing how much I need a new tab for disability on here!  Coming soon…)

What I’ve found as I’ve only just begun to embrace this collision of my anthropological, theological, and spiritual life is that our theologies, when it comes to understanding disability, are quite limited.  They’re often not broad enough to consider the gifts of the Spirit people with disabilities possess, because they’re caught up in a rhetoric of healing, medicine, suffering, or overcoming.  Or they’re plagued by an anthropology that makes disability some surface form of neoliberalist inclusion rather than a deep paradigm shift for us all in what diversity and its value really confers.

We human beings are searching for theologies of disability that ring true when it comes to the light, challenge, and wisdom people with disabilities bring to life–theologies that confront our hollow concepts of both diversity and God.  But we need to learn and hone and witness to these theologies through practice rather than mere intellectualism, recognizing the transformative experience of life lived with other and with God.

I’m excited about being part of a recent series on Youth Ministry and Disability organized through The Institute for Youth Ministry at Princeton Theological Seminary because the authors are making the case that the Church needs people with disabilities rather than the another way around!  I think this is a really exciting moment for the theology of disability, and I hope you will read all the posts and leave your comments and continue the conversation.  I’m including mine below, but please do swing by this one from my colleague, Joel Estes, and one of the great theologians of disability, John Swinton, among others!

********

On Being Transformed

“You never know. Maybe she will get up and walk. Maybe she will be able to eat and talk like other kids…maybe someday she will be normal.” 

I have often heard these well-meaning words from friends, colleagues, and church folk about my daughter, Lucia, who was born with a progressive genetic disease of the brain. From the time she was just a couple months old, from her seizures, to her feeding tubes, and onto her diagnosis, our family has been confronted with the idea that Lucia is abnormal. But perhaps especially because she’s our first child and we know no differently, or perhaps because my husband and I have learned so much from her, I bristle at statements that suggest life would be better for us or Lucia if she would conform a bit more to the standards we hold for other kids. As a person of faith, I often wonder what God would have to say about our ideas of normal and how God might use children and youth like Lucia to fight against a culture that (perhaps un-self-consciously) worships ability and regards disability as a problem.

Keep Reading at The Institute for Youth Ministry…

Why I’ve learned to see gifts where others see limitations

The tenure track job.

It came up again today in conversation and I heard myself explaining away Lucia as somewhat of a limitation, a barrier to my acceptance of a prestigious position at a faraway university, and the words stung on my lips.  I didn’t like the way they sounded, not because of what they necessarily made Lucia out to be, but as to what they failed to communicate about my life with her. We may not be in China or Europe or even the Midwest anytime soon given that moving, let alone traveling with Lucia is daunting, but I’m starting to see that parameters aren’t always limitations, but often, good and wonderful gifts.

When I focus on the things I can’t or no longer do as Lucia’s mother, I neglect the way in which our tax payment to the state of New Jersey took on new, holy meaning this year, as we’ve become so gracious for the services our daughter receives from the state everyday.  Even the fact that we are seemingly grounded here because of Lucia’s state services misconstrues the amazing provision that we just happened to have a special needs child in one of the states with the greatest benefits for such kids.  Lucia wasn’t accidentally born into such a blessing, but wonderfully, purposefully so.

And then there’s the incredible academic rebirth I’ve had as a result of learning to love Lucia.  Whereas I was already studying foster children with disabilities in China, my experience with Lucia pushed me to develop and teach a new course on “Disability and Difference” at Princeton, to write on my personal experiences, and to begin to combine my scholarly and personal pursuits.  My journey alongside Lucia to reconceptualize diversity, justice, and faith through the lens of disability has been revelatory, and I am so grateful for her guidance.

There’s a really mixed bag here because I often suffer with Lucia, and I also struggle to comfort her, understand her, and help her.  I feel firmly that Lucia’s daily struggles shouldn’t be eclipsed by my own growth or edification.  But several years after God acquainted me with foster families raising children with disabilities in China who made us want to become parents, then God granted us our one-in-a-million Lucia.  I seek to embrace what God has shown me as God teaches me so profoundly that my daughter is fearfully and wonderfully made.

Another thing that I see is God melding these seemingly separate lives–that of the scholar, the pastor, and the parent–in far more intentional ways than I ever could.  In other words, we have partially stayed in New Jersey because of Lucia’s special needs, but I’ve also stumbled upon an opportunity to minister and teach and care for my child here that is life-giving and good.  The gift of living life alongside Lucia has taught me that life is not always as it seems, because there is blessing in what God builds amidst difficulty, sacrifice, and challenges.

In a recent blog post, a friend of mine wrote about how much his son with special needs has taught him not just about life but about the Bible and about God.  The truth is so much of Lucia’s giftedness is in revealing to me my own limitations, in enlightening me in what God is already doing, and in inspiring me to be a better follower, servant, and mother.  Lucia shows me the fullness of life, not in her limitations, but in our mutual, challenging, deep relationship, and I am deeply grateful.  Lucia continues to push me to fulfill my purpose in God and for others.

I might have said then, that Lucia is hardly a limitation–rather she is a gift.

She is a person that has made my life so much more meaningful than it could have been otherwise.  From one vantage point, her life has placed certain constraints on my own, but I believe she has also grounded me to see and experience the gifts and the goodness of God anew.  She has pushed me to reevaluate that tenure track job, not because I can’t have it or she doesn’t want me to have it, but because it doesn’t necessarily represent promise, privilege, or prestige that really matters.  She pushes me to live a life that matters, a life worthy of the calling I have received: she makes me whole in a way I could never have conceived.

And so I say, thank you God, for this good and perfect gift.

Lucia and Daddy
Lucia staring into her Daddy’s eyes during a recent hospital stay.  My photo.

 

On “special” needs and ministry

The Sunday morning crush–those moments after worship lets out and as a pastor you spiral through the gauntlet of requests, cordialities, and pastoral care where in a matter of condensed minutes nearly everyone wants a piece of you.  Across these moments I struggle to keep track of all of the information, making mental notes, hoping against hope that I won’t lose the important stuff amidst the sea of bodies and sounds and breaths.  And then, just as suddenly, one of our congregants with special needs descends upon me, with increased intensity and concern.  She has seen something on the news that is bringing her to tears; he becomes angry as he struggles to remember what he just said to me; she can see nothing but darkness through the thick depression that plagues her.

I do not mean to paint disability here as unilateral or un-diverse, but many of the people in our congregation with special needs where their hearts on their sleeves.  They plough into me, a person who’s a bit sensitive to touch, with eager, forceful hugs.  They launch into detailed descriptions and litanies–lists of weekly activities without warrant and ad nauseum.  They foist their feelings upon me in thrusts of emotion, seemingly without warning or reason.

And in so doing, they are deeply needy.

Their bare, disruptive, palpable need right there in the midst of more palatably, socially-aware displays of contained emotion, less barrier-breaking touch, and less audacious requests clashes with my own sensibilities.  It’s too much, I think to myself, this business of trying to minister to folks with special needs alongside more “neurotypical “folks, which is the dance in which our church has become messily entangled over the past few years.  I can’t help but think about the imbalance special needs present not just during Sunday morning but within the life of a church–how I, as a pastor, can’t shirk the sense that in attending to these needy folks other more subtle needs may be lost.  In trying to provide classes and worship and counsel that is suitable for all modes of learning, my colleague in ministry, church leaders, and I may be spreading ourselves thin, engaged in some cruel, impossible quest to meet needs that are unreasonable and insatiable along others that are more comprehensible and predictable.

Sainte Chapelle
Stained glass at Sainte Chapelle, Paris, France.  Photo by Evan Schneider.

But in pondering neediness I am reminded of the poor, elderly foster mothers whom I met in China and the way their vulnerability rocked and assaulted the sensibilities of the orphanage monitors.  Such women, many of whom had been abandoned by their own biological children, so desperately relied upon and needed their orphaned, disabled children to recreate life-giving family bonds in contemporary China.  In their need, they reminded middle-aged orphanage monitors of their own failures to care for their aging parents or their neglect of their only children.  They reminded these orphanage monitors, powerfully, uncomfortably, and disruptively of their own human and yet deeply repressed and seemingly inappropriate needs for love, compassion, and care.

And here I do mean to compare the need of these foster mothers to the need of folks with disabilities and to the needs we all have as human beings.  I am reminded of Jesus’s ministry to deeply needy people–to the perceived inconvenience of the poor, disorderly women, especially those pouring lavish ointments over his head and touching the hem of his garment.  I am reminded of the metaphors so often associated with need and disability–the unclean, the contaminators, the sinful–and I am aghast that in erecting divisions between people with disabilities and myself, I find that I am the one who is fragile, human, and sinful.  I am suddenly aware that the crush of bodies on Sunday morning and these raw emotions, hugs, and pressing needs that seem so inconvenient and disruptive are both deeply human and deeply holy.

And I begin to see that ministry and life (for in Jesus’s life), were not and are not about balance or containment or arbitration, because then life becomes about division.  Then I am led to believe that some people are needy while I am not or that need isn’t so fundamentally human, that it’s not part and parcel of Jesus’s incarnation and ministry.  So I try and I struggle and I pray to let go of my economist tendencies and submit to such a mysterious ministry of mercy and care and love.  I try not to mediate the crush; I try just to pay attention.  

But I am also reminded that it’s not just paying attention, and how painfully aware I become in these moments of my own need–my need for self-acceptance, other’s acceptance–and my need for Jesus.  And I become thankful that there are some in our midst who aren’t necessarily having such divisive thoughts or harboring such divisions, some who are so deeply, honestly, beautifully needy.  I become happily convinced that “we” have gone about this ministry all wrong, for “we” have so much to learn.  I become convinced, so richly and powerfully as I do over and over because of God’s ministry to us, that it is not I who is ministering but it is I who am being ministered to.

Crucifix
Crucifix in Paris, France. Photo by Evan Schneider.