Category Archives: anthropology

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.

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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.

 

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.

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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.

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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.

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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.

Why we cannot make the bipartisan case against Trump on the backs of people with disabilities

In his May 3rd Opinion piece entitled “Trump has a dangerous disability” in The Washington Post, columnist George Will writes, “It is urgent for Americans to think and speak clearly about President Trump’s inability to do either.  This seems to be not a mere disinclination but a disability.  It is not merely the result of intellectual sloth but of an untrained mind bereft of information and married to stratospheric self-confidence.”  Will’s argument and rhetoric struck a seemingly bipartisan and straightforward chord as the piece was widely reposted by conservative and liberals alike—“Trump disabled,” began The Hill’s headline, while The Free Republic, a conservative forum, as well as Black in America, reposted the content; another site summarized, “George Will: Trump has a ‘disability,’ is ‘uniquely unfit.’” 

However, as a scholar of disability and a parent of a child with disabilities, these headlines and their rhetoric sounded all the alarm bells.  Surely a unified public that holds our erratic and impulsive president accountable to for his actions is to be welcomed–but not at the expense of the dignity of people with disabilities in America.  Indeed, what is hardly subtle, but seemingly unnoticeable to readers of headlines like these and their content is the blatant criminalization and marginalization of people with disabilities in them.  For instance, just try replacing “disability” in Will’s headline with any other identity, ethnicity, race, or sexual orientation, and suddenly Trump’s main reason to be feared—his presumed disability—reveals a startling prejudice toward difference in America.

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Credit: David Hosey, LA Times.

Even if Will is onto something here in observing Trump’s inabilities, I suggest that he has inadvertently used disability as a vehicle to make the dangerous even more insidious, corrupt, and devoid of rehabilitation by appealing to some seemingly innate, suspiciously subhuman defect.  Such rhetoric imperceptibly recycles previous tropes in the media that cast people with mental illness as unusually aggressive and pin gun violence on their disproportionate crimes—stereotypes that do not hold up statistically and are vestiges of longstanding cultural prejudices toward people who are “mad” or “insane.”  The headline that highlights Will’s own words, “George Will: Trump has a ‘disability,’ is ‘uniquely unfit’” goes beyond these associations to imply that people with disabilities are somehow unfit to serve in office by virtue of their mental, physical, or emotional differences.  The problem with Will’s tactic here and with rampant allegations that Trump has a disability are that they do nothing to cross this divide between able-bodied and disabled citizens, decry inaccurate stereotypes or effect genuine understanding.  Rather disability remains but a vehicle and a scapegoat for our fears about Donald Trump or more disturbingly, a scapegoat for our fears about humanity.

Yet, perhaps the greatest issue with Will’s column is that by criminalizing people with disabilities, he not only perpetuates their stigma, but also draws attention away from the very discrimination that Trump himself, his cabinet, and his commitment to repealing the Affordable Care Act have reinforced against people with disabilities in America today.  Who can forget the moment Trump cruelly mocked a reporter with cerebral palsy during his campaign, only to claim that it never actually happened?  In her hearing, Trump’s Secretary of Education, Betsy DeVos failed to acknowledge the national purview of the IDEA, a piece of legislation that protects and guarantees education for students with disabilities; his Attorney General Jeff Sessions has also made derisive and deriding comments about children with disabilities.  Finally, the GOP American Health Care Act that President Trump and Republicans just cheered as it passed through the House levels $880 billion dollars in cuts to Medicaid over the next ten years that would deprive people of disabilities, namely my daughter, from important medical, educational, and accessibility services.  While George Will decries Trump’s dangerous disability and readers clamor to dangerously speculate themselves, these are the real yet hidden dangers of a Trump presidency for people with disabilities.

Meanwhile a month ago before the original version of the AHCA Bill was set to come before the House, I received a call from my Republican Congressman, Leonard Lance (NJ-7).  When we hit connection issues, our call dropping nearly four or five times, he called me back again and again.  When he finally got me, he took over fifteen minutes to get to know me as a pastor, a professor and especially a mother, taking a keen interest in my daughter who is thriving through a Managed Long-Term Special Services program (MLTSS) afforded to her through Medicaid.  He told me one of the main reasons he was voting against the bill was to protect that program, as well as protect people on the Medicaid expansion.  He understands and made clear that poor people and people with disabilities are the very people that should not be denied healthcare, no matter the changes Republicans or Democrats want to make.  Last week, he kept his word and voted against the House Bill that passed; he didn’t vote with his party—he voted with people like my daughter and me.

I certainly agree with Will and his readers that real life bipartisan unity, the likes of which is offered by Lance’s vote and his positions on people with disabilities, is even more critical in the face of the House passage of the abhorrent AHCA, Trump’s most recent egregious firing of FBI Director James Comey, and the lack concern he shows for rule of law or the cares of his constituents.  But if the biggest divides in this country remain not partisan but based upon fear of disability and its inhumanity, then we are in much more dire straits that I thought.  I know far too well that when people ridicule Medicaid, they don’t think about kids like my daughter.  When they see her, they often look past her, and to many, she may be a strain on taxpayers dollars, a basket full of preexisting conditions.  But as a Democratic Congressman, Joe Kennedy (MA-4) so eloquently put it, “among the most basic human truths” is this unifying vulnerability of the human condition.

If we are to move forward, we must have the conviction to confront Trump’s ignorance, prejudice, and bigotry on the basis of this shared humanity, not on the backs of people with disabilities.  We must make it clear that Trump is uniquely dangerous–but more precisely because of the way he has continually undermined the very humanity of people with disabilities.  

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My daughter, Lucia, in front of the irises in bloom at our house in New Jersey.  My photo.

 

 

Why I Love Being an 8 on the Enneagram

For those of  you who know me well, you know I’ve spent the last year reading almost everything I can get my hands on about the Enneagram and I’ve become somewhat of an evangelist for the personality tool among my friends and family.

Ironically my first foray into the Enneagram was not so entrancing–when I had to do a routine psych evaluation for ministry preparation, the instructor rather used my found type against me, arguing that perhaps it explained my aggression, hostility, and even atypical masculine characteristics!  Among people who know the Enneagram well, it’s not a secret that female 8s get a bad rap and are often misunderstood.  So that’s why it’s all the more profound that a few days ago, I think I finally realized what’s so powerful and meaningful about being an 8 in this world–a personality I haven’t always found so compelling or easy to live with.

Now if you’re new to the Enneagram, it may sound like I’m speaking another language.  But simply put the Enneagram is a personality system that groups our personalities into 9 types, but unlike Myers-Briggs or other personality systems, you’re not easily diagnosed through a test, because it’s a dynamic, interactive, relational system.  According to the Enneagram, the best parts of you are also the worst parts of you, so people don’t always find it “easy” or “happy” to find out their types, but thankfully, the system also allows for and encourages dynamic growth.

For my own part, and especially as an anthropologist, I think the Enneagram’s best, most basic reminder is that even if we’re from the same family, we don’t necessarily see the world the same way.  But other ways of seeing aren’t bad; in fact, they’re what make the world a much more interesting and beautiful place!  One of the best takeaways for me from learning the Enneagram is not just understanding myself better but also building more compassion inside myself for others in respecting and empathizing with the beautiful, perplexing ways they approach life that make the world a much more complicated, but fuller place.  Essentially the Enneagram affirms one of the basic tenets of anthropology: our differences make us human!

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Love this visual of the different Enneagram types and their values.

Therefore, if you’re interested in learning more about the Enneagram and even figuring out your type,  I’d recommend that you read about all the types, and perhaps in lieu of taking a test, read some of these great descriptions of each type, paying attention to the core values, the things that make you tick (you can scroll down for my suggestions for further resources below).  Enneagram types are complex in that they don’t tell you what a person’s vocation will be or whether they will be successful, but rather tell you more about that person’s motivation in life and some of the challenges they face and gifts that they possess.

But as I mentioned, when a lot of people find out their Enneagram type, they recognize it primarily because of the flaws they can see so clearly in themselves, while they fail to acknowledge or hone the strengths that inhabit their way of seeing the world.  As an 8 (with a  7 wing), “the challenger,” someone who is a natural born leader, makes decisions incredibly quickly, and is fearless, I had been really struggling with an experience of vocational discernment as of late.  In fact, because of these impetuous and quick-witted qualities, I kept remarking to my “spiritual director” that I suck at discernment: the waiting game, the listening game, the methodical weighing of options is just not me.  And as someone who is much more inclined to rely on my mind rather than my heart, I bemoaned my lack of intuition.

However, this type of thinking ignores some of the qualities which make 8s truly exceptional.  Because of my gusto, I am truly and uniquely fearless.  This certainly becomes a weakness in that I may struggle to emphasize and understand the insecurities others often face on a daily basis, but in my own life, when I see a challenge, I am invigorated, affirmed, and inspired.  Sign me up, I think. I’m all about taking risks, I scoff.  Bring it on! 

Thus, in my life when I have been able to reframe uncertainty and discernment as a challenge, I’ve been able to very quickly embrace the adventure that God has in store for me, not worrying about the consequences or the trials of that risk but plowing full steam ahead.  (As I told one of my friends recently, I may be a battering ram, but I can be a battering ram for Jesus!)  What I’ve noticed in discernment and uncertainty, though, is that I have a tendency, as many of us do, to try to usurp control (how very 8 of me) from God.  I spin into full-on planner mode, determined to think through the details of my future, when the very best that God has for me may not even be visible yet.

My spiritual director has invited me to ponder God’s faithfulness by asking me, “Think of the five greatest things in your life.  Which ones were you responsible for?  Now which ones did God provide?”  Indeed, as a person of faith, in spite of any Enneagram personality knowledge, I am committed to living the life that God has for me.  And I’ve realized that this involves abdicating my long-term planning role to God.  Ironically, uncertainty and long-term planning are two things that in my penchant to control, send me spiraling out of control, leading away from my strengths and gifts as a passionate 8 who leads with vision and conviction.

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My twin sister and I taking in the views of the dragon’s neck rice terraces in Guangxi.                Photo by Evan Schneider.

I’m not alone in these insights, though.  There are many, many people of faith who have begun to draw upon the Enneagram for wisdom not just about who we are, but who we are in God.  For me, I’ve started to see how unique it is that I love a good challenge and that I’m not afraid, and I’ve become even more convicted to strive toward the unique vocation (somewhere between anthropology and ministry) that God has for me, even though the world may not always understand that call.  8s are often known for being resilient and strong, and I realize now that this takes “guts.”  Even though I may lack for what I termed intuition, I am at my best when I’m relying on and hungering after God, throwing all of myself into that new challenge and adventure!

How has the Enneagram helped you live more fully into your purpose in God?  What lessons have you learned about God and faith by getting to know yourself better?

If you’d like to learn more about the Enneagram, I’d recommend listening to the Liturgists extensive podcast on all nine types,  reading a bit about each type and then taking the “Essential Enneagram” test by David Daniels and Virginia Price, which is really just a series of paragraphs that you read seeing which one best describes you.  I think this is the best way to discern your type, but the most important things are to 1) gain an appreciation for all types and 2) to take your time in discerning your type.

I also really like the Podcast, The Road Back to You, based on the book by Suzanne Stabile and Ian Morgan Cron, because it gives you an opportunity to listen to other people talking about their journeys in understanding themselves, others, and God through their types.

 

 

How I know my daughter will be (more than) okay on her first day of school

I had this one fear when I realized that Lucia had Aicardi-Goutieres Syndrome and would likely live a rather unconventional life.  It wasn’t that she would be different–as an anthropologist (and a minister), I’ve learned to embrace difference, and the foster mothers I studied in China had enumerated the ways in which people very different from us often expand our very knowledge of ourselves and what it means to be human.

My fear wasn’t even that she wouldn’t be loved.  How grateful I am that I’ve never really feared that given what an amazing community of individuals God has placed in Lucia’s life who so dearly value her and endeavor to love her just the way God made her.

But I whispered to a few people and I worried in my heart of hearts that while Lucia might be able to receive love, she might never be able to give or express it.

I don’t think I worried it selfishly (although certainly naively), but I just thought about my own life and how much I’ve learned and received and grown by the very challenging act of learning to love others–not just receiving love–and I guess I couldn’t quite imagine, amidst days on end of shrieks of pain, colossal brain damage, and multiple disabilities, what that would really look like for Lucia.

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Lucia enjoying her balloons on her birthday.

On the eve of her first day of school and just past her third birthday, however, I not only finally see how much I underestimated her and God but how much a person can say without much purposeful movement, without words, or without rolling or crawling or walking or talking.  I underestimated how much joy can emanate from such tiny, immobile person–how by the age of 3 Lucia has taught me more about love than I’d learned in maybe three whole decades–how her way of loving would change everything I thought I knew about God and life and love.

“Do you think she knows you?”  people will ask my husband and me, and there are things we will tell them, like how she cocks her head and her eyes focus for just a split second when she’s really listening or when perhaps her limited vision has allowed her to take in some glimpse of the world.  Or how she recently started to erupt into fits of giggles when she hears her daddy make farting noises or how a slow smile seems to creep over her face when my husband or I set foot upon the creaky boards in our noisy house.  Or how there are times when you take her in your arms and she seems to wrap her rigid little arms around you in a way that makes you feel known and held and real.  

But it’s all very hard to tell or describe, because you can’t break joy or love down to a science.  How do you know your child loves you?  You just do.  There’s a feeling between you and it doesn’t go just one way when it’s felt–it’s a shared cultivation, this business of living and being loved.  And how I ever thought it possible for that love to be unrequited now feels so distant and so foolish and so naive.

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Celebrating Lucia’s third birthday this February.

And so I can’t really find it in myself to worry about how Lucia will do when she goes to school.  Lucia will do just fine.  We know she will grow so much by being around other kids and by learning and by moving–she’ll thrive in a social environment, for sure.  But those people around her–I’m almost more excited for them.  Because they will be loved with a joy so deep and so profound and so beyond any of our imaginations that they will grow in these ways that none of us ever imagine to be possible.

Lucia reminds me how much more there is to be learned from those who seem the least capable, the most impaired, the least adept at the things in life and that there’s something of God’s love in every speck of our beings however imperfectly or perfectly made we may appear.

We love because God first loved us.  Every single one of us.  Even my Lucia.

Thanks again.

We, like so many other parents across the globe, took our almost three year old to her first political protest on Saturday.  And like so many, it was not necessarily the words of the speakers or the size of the protest that mattered so much, but the experience of standing alongside others in that damp, dreary weather and feeling the light and the warmth of knowing we’re not alone in the fight for the rights and dignity of all people in this country.

But when another pastor came up with his family to tell us that he had first started to take his now teenage son to protests when he was about Lucia’s age I have to admit that I was a little dismissive.  Lucia would probably not be conscious of this protest anymore than ones she might attend in the future–in other words, I was emphatically aware of the cavernous difference between his able-bodied son and my disabled daughter, of his typical family and my not so typical one.  Minutes later an elderly woman wanted to present Lucia was the paper crane she’d been fashioning while she stood beside us.

 

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Photo credit.

“Kids must be so bored at these things,” she whispered.  “Perhaps she’d like something to play with.”  

“Oh, well she can’t really use her arms,” I replied dryly.  

“Well, can she see?” she persisted.  

“No, not really,” I replied again, rather impatiently.  

“But she can feel,” I finally acquiesced, flapping the tiny wings of the little bird against Lucia’s cheek to the woman’s contentment.

Even then, despite this woman’s resolute patience, I felt a pang of ambivalence.  I perceived her persistence to be a reflection of her own desire to give her gift, whether or not it might be appropriate to give or whether Lucia could really receive of it.  Despite the myriad of people who encircled us to tell us that they liked our “#disabled lives matter” sign and smile at our toddler with special needs, I realized how was possible it was to feel disconnected to the 7500 people with which we stood.

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Protesting at the Trenton Women’s March.  My photo.

Nonetheless, not only the Trenton march, but the hundreds across the globe, especially the march on Washington, were an enormous success, and on Sunday as we stood in the church hallway, the other pastor and I chatted excitedly about what it feels like to be part of history.  I remarked on how deeply moved I was by all the supportive responses to the piece I published on Thursday on this blog and Friday in the Huffington Post and how emotional it was when friends texted me photos of themselves marching in name for our daughter, Lucia, and disabled people across the country.  But then again, almost before the words were out of my mouth, I realized I didn’t like how they sounded: I realized I was being dismissive again.  I said something like how loved we felt, how Lucia had been so happy all day, but of course, she didn’t understand much of what really was going on, although it still meant something to us, to her parents.

“Oh, I don’t know,” my colleague replied graciously and carefully with something like,  “I think love is love.  I’m not sure we really know how people love, how it works, or how they receive it, but I think we can feel it.  I think everyone can feel it.”  

I swallowed, a big lump rising in my throat, and I thought about the pastor and his kids and the woman with the paper crane.  I thought about the 7500 people marching in Trenton and millions of others across the globe.  I thought about the words I’d written last week, and I realized that in the midst of calling for Lucia’s rights and for real love for her, I, too, have the ability to silence her.

It’s not up to me to decide what’s love or whether or how Lucia receives it.  I realize that as much as I understand the reality of my daughter’s differences, I am not in a position to fathom what love really feels like to her, how she receives it, and how she experiences it.  Those are my own limitations, and it’s not for me to constantly assert her differences when other people see common ground, or to presume that there’s a right or a wrong way to love her.  I realize that perfect love isn’t about the most appropriate gift or words or gesture, but it’s about the desire to engage, to stand with, and to keep trying, even when the caverns seem massive and deep.

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Amy Gabriel of marches in South Jersey.  Photo by Dave Hernandez (Burlington County Times).

So with a humble heart and a contrite spirit, I realize just how tremendous and miraculous your outpouring of support has been, how deeply thankful I am to all of you not only because you’re fighting the good fight, you’ve got my girl’s back, and you’re doing everything you can to be a voice for justice, but because you remind me and are teaching me everyday about what love really means.  You’re teaching me what it really means to let go and let Lucia love and be loved by you.  And it’s not necessarily how I would have imagined it.

But thank God for that.

Thank God that despite our limitations, God somehow uses people to enable love to break through and remind us that God is love–that perfect love looks like undeniable kinship between so seemingly different families, paper cranes, spirited marches, letters to Congress, Lucia’s happiness, and so much in between.  

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Our happy smiles on Saturday.  My photo.

Love is love and God is love and that’s why, despite our best (and flawed) human efforts, we’re never really alone.

—–

P.s. The Betsy DeVos vote has been postponed until Jan. 31 so that gives you a week to call your Senator!  See my previous post post-script (hehe) on why DeVos is bad on disability rights and how to call.

P.p.s. The Jeff Sessions vote could be as early as tomorrow!  Call your Senator now to oppose and read this article to see why he’s bad for disability rights, too.

P.p.p.s. Letter writing is effective!  Learn how here and please write to your Congress-people (you have one rep and three senators) asking them to protect state and federal Medicaid for families with disabilities!

Embracing difference as a spiritual discipline

We Christians have not been known, especially in recent years, for our ability to embrace difference…but what if we were?

A few weekends ago I listened to a podcast on the enneagram, the typology of nine interactive personality types that supposedly traces back to the desert fathers, and have been fascinated ever since.  But while I have loved learning about my type, where I’m prone to stress and poised for growth, what I’ve loved most about the typology is the window of empathy it has given me into the way I view my friends, family, and co-workers.  The enneagram, at its best, celebrates the differences that make us human, and instructs us not to try to change but to further understand and know one another.

But what about when people are really, really different from us and those differences confront what we think we know about ourselves, our culture, and even our faith?

As an anthropologist, I’m not only attracted to, but trained to appreciate differences in all their human forms.  When I meet someone who tells me about a different upbringing, worldview, or belief system, my ears perk up, and my intellectual curiosity sparks.  “How fascinating,” I think.  Tell me more,” I often blurt out instinctively; I listen and wait and expect…to grow.

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JingPo Christians in Yunnan, China.  All photos by Evan Schneider.

This robust respect for difference is entangled with one of the controversial, central tenants of anthropology–the notion of cultural relativism, or the belief that you kind of have to know a bit, well a lot, about another culture to understand it and to see and understand how they value what they value.  All cultures contain truth and integrity, but we rarely stop to pay attention and try to see things the way others might see them.

As I mentioned, this tenant is controversial because it’s really challenging.  Especially in the course I teach on disability, it’s almost impossible for our ableist and intellectualist-coded minds to stretch ourselves to consider disability as yet another element in human diversity.  When I assign a provocative chapter that references the very title of our course, “Disability as Difference,” students are wont to collapse the tension, to find the differences of disability clearly lacking or deficient, or at the very least, to assimilate the disabled to be “just like us.”

We human beings are simply not very good at seeing difference as valuable or even neutral. We’re constantly shaping, skewing, explaining, and evaluating differences (and different people) that we come into contact with everyday.

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The great Buddha at Lantau, Hong Kong.

But what if we added to our spiritual disciplines the act of allowing space for difference and even appreciating difference before we try to so hard to reform it, judge it, or rehabilitate it?

I think Christians especially have been afraid of the costs of such a foray.  We are afraid of where an appreciation for difference may lead us–astray from our Christian beliefs, our Christ, our God, our truth.  But if we are so easily lead astray from our faith when we value the differences of others, do we not serve a God who is small to begin with?  If our faith falters at the very introduction of contradiction, tension, and diversity, is our faith not flimsy and perhaps very worthy of being discarded?  Might we find a more robust faith, as Jesus did, in accompanying and learning from those who are different from us?

As an anthropologist who has learned so much from others about God precisely because of this openness toward difference, I seek a faith that is deep and profound and hearty because it is constantly probed and reevaluated and tested by what I am learning.  At every angle, when I exclaim, “That’s fascinating,” and sit at another’s feet to listen, I may risk something, but I also stand to gain so much.  I find this openness to difference, this grappling with diversity, to be a spiritual discipline because God is nothing if not miraculously incarnate and yet profoundly different from us at the same time.

But often we forget that truth.  

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Family out at a restaurant in Cairo, Egypt.

We presume God to belong to us, to be just like us, to be ours, to be with us and for us.  But I think God wants us to read scripture against the grain, to consider the rich diversity among its pages and in our lives, and to explore with abandon, making ourselves profoundly open to others and to God in unlikely and unexpected people and places.

We can’t do that if we’re afraid and closed off to those who are different from us, though.  We can’t grow if we don’t allow difference to disrupt our neat beliefs and convictions.  We can’t truly know God if we confine ourselves to that which is similar, expected, and narrow.

Do you do this in your life?  How do you embrace difference as a spiritual discipline?  How has it enabled your faith to grow, even if it has been tested and tried?

My husband often talks of how our seminary professors challenged us to discover a second naiveté after the faith of our childhood failed us and here Cornel West talks about a healthy atheism. I’m really interested in exploring how vulnerability like this to difference, especially, can help us to grow in our love for one another and God.