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.

18881774_10155240656146153_8464718724205545956_n.jpg
Lucia and mama on a recent hike.  My photo.
Advertisements

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.

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.

screen2bshot2b2017-05-032bat2b3-57-582bpm
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.  

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

 

 

Why I’m grateful my child was born different

“No parent wants their child to be different,” she said passionately yet nonchalantly, looking innocently into the camera in this week’s premiere episode of a new season of the reality tv show, Little People, Big World.  She was talking about the possibility that their baby would be born with dwarfism, while meanwhile her husband, a little person, shifted uncomfortably in his chair, trying to parse the divide, forgive her somehow for saying that his very difference, one she presumably accepted and loved, was so naturally undesired, bad–something to be feared.

I don’t mean to pick on her specifically.

I think many of us bristle at the presentation of disease and disability as unwanted variations and aberrations in nature’s otherwise rather painstaking track record for miracles, successes, and beauty.  But what if I told you there were all sorts of dormant mutations in your own genetic material?  What if I told you that nature “makes mistakes” all the time and it’s just that some of these variations are visible while others are less so?  What if I told you that Lucia, my own daughter, was the result of one of those presumed “mistakes,” so rare, so different, yet so deeply loved and wanted?  Might that change your mindset that difference is always something to be naturally avoided or eschewed at all costs?

construction-of-baby-heads
Image Credit.

Underneath the reality tv star’s seemingly innocent words ran a subtle, yet deep vein of privilege and conceit.  Anyone who cared would prevent difference if they could, she presumed.  But different to whom, I wondered.  Black kids are born into a pretty inhospitable world, but it’s not their blackness that’s a problem but the normative white culture that devalues their lives.  Gay and transgender kids aren’t really all that different than any other kids and yet their difference is targeted as an assault on heteronormative culture that reproduces itself through fear and exclusion.  As long as difference remains the much feared, undesirable cultural alternative to healthy and white and straight and male, we desecrate the true variety and value of human life that God has made because we play God ourselves–even if it is ever so subtly with our wishing away of certain babies like mine.

The day after legislation that devalues the life of people like my daughter, people who are poor, people who are sick, people who are women, people who are victims of rape, and people who are old passed through the House, I still have the audacity to dream differently.  And I have my daughter to thank for that.  I don’t want to live in a world that she is not in, because I would not know the fullness of what God has given and imagined for human beings.

And yet, this world, this country specifically, is becoming extremely inhospitable toward my daughter month by month.  As a parent of a child with special needs, I want to live in a country that accepts and loves and cherishes children who are different– not with asterisks or snide comments or fearful glances or knowing pity or minimal health care or scant education–but full stop.  Don’t tell me how expensive my child’s medical expenses are or how arduous her special education is, how different her needs are from a typical child, how wildly incompatible they are with this cutthroat ability-obssessed culture we live in, because I really do know.  I know this isn’t easy because I’m living it alongside her.

But I made peace with Lucia’s challenges years ago; we’ve gone on living this incredibly full life and we’ve been buoyed by our church, friends, family, and the incredible array of services NJ Medicaid provides.  Our family has found refuge in a state that truly values her life, but for how long?  How long will you continue to live by the conceit or the privilege that your life is somehow any different from ours?  How long will you fear rather than embrace difference, support legislation that carves us off from one another by our differences, asserts hierarchy in nature when you know not what mutation, future, or controversy may come–legislation that makes health the luxury and priority of the rich?

Control over the progression of my daughter’s disease is a true illusion, but the choice to value her life and give her every chance possible–that’s firmly in your hands and mine.

And God knows, I’m still so very grateful that my child was born different.

*If you want to learn more, read this piece on “5 Things to Watch as GOP Health Bill Moves to the Senate,” and if you want to act on behalf of families like ours and kids like mine, call your Senator and tell them our story!

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!

c8da546f3e295a0b06f20673962efeac
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.

282287_10151220455866153_668998824_n
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.

 

 

What I don’t take for granted

Tears came to my eyes and my voice cracked as I told my mom over the phone today,

“It was only recently that we found a way to stop worrying that Lucia would die and decided to love her so fiercely and just live life together.  And now we’re afraid everyday that she might lose the benefits that make her life so wonderful.”

You’ve seen me write about it on this blog countless times–the life so grand that we couldn’t have possibly imagined, a life for which we are never sorry but so deeply grateful. Our daughter, Lucia, who was born with a terminal, genetic disease of the brain, is the greatest gift we’ve ever been given.

But we don’t take that gift for granted.

How can we when our private employer insurance granted through one of the most prestigious universities in the world denies all the things she needs from in-home nursing services to wheelchairs to surgeries and nearly everything in between?

We’ve learned the hard way that private insurance companies will never cover Lucia’s needs because they’re deemed too expensive, too rare, too disadvantageous.  So when Lucia was 6 months old, I began filling out paperwork for New Jersey state Medicaid, a process so complicated I could hardly navigate it, even though I have a Ph.D., a Masters, and a Bachelor’s degree.  For 6 months we paid out of pocket for all the things that our employer plan wouldn’t cover and we racked up nearly $10,000 in medical expenses.

But things started to shift when we got the first person from the state’s Early Intervention program into our home; she took one look at Lucia shrieking in pain and me helpless to comfort my child and told me, “You shouldn’t have to do this alone.  We can help.”  And I will never forget those words.  6 months later when Lucia got onto the NJ State Medicaid MLTSS program (Managed Long Term Special Services for kids with outstanding medical needs and disabilities), everything changed.  Suddenly, our secondary insurance through the state stepped in to pick up the tab on the myriad of services our private insurance denied.  Those giant insurance bills and many of our worries about how we could pay and support her future melted away.

We felt that we had found an incredible safety net in the state of New Jersey.  We bought a house here in a school district well-known for going above and beyond for supporting kids with special needs.  And Lucia has been taking the bus to a wonderful special needs school; the social worker in our district has been undyingly supportive of our requests.  The school district is willing to foot the bill for those bus trips, special equipment, and extra support in the classroom.  And Lucia comes home from school everyday babbling (literally babbling) and smiling and laughing because she couldn’t be happier.

16938869_10154934027926153_6350866115862414107_n
Lucia smiling on the porch after a great day at school.  My photo.

But we can’t take that for granted.

A proposal passed by two House committees last week looks to slowly trim over $880 million dollars from Obama’s Medicaid expansion and also cap annual federal payments to state Medicaid programs.  I realize that my daughter is on the traditional Medicaid program and not the expansion under the NJ MLTSS, but here’s what I also know to be true as a parent in state with incredible benefits.  First, those benefits are rare–most states have long waiting lists for such special programming (if they even have it) and so those who benefit may not even be those most in need.  Many of these families are covered, however, under the Medicaid expansion.  Furthermore, only 50% of the funding for the MLTSS program comes from the state of NJ, the other 50% comes from the federal government.  That means cuts would certainly affect NJ’s ability to provide the programs it has in the past.  And finally, in striving to be an advocate for my child, I’m also not taking for granted what’s been given only to us.  ALL children should have the rights to attend free public school that meets their needs, receive services that they need to not only live but thrive, and we are not doing enough in this country for the least of these–and trust me, that’s who’s on Medicaid–kids, people with disabilities, seniors, and people struggling with addiction.

But I’m begging you to not take any of this (and this is really what makes America great) for granted either. Indeed, I am so thankful to live in a country where I can speak out and where my voice can make a difference.  I have spoken to my member of Congress; he’s a Republican, but he’s willing to fight to protect both the NJ MLTSS program and the Medicaid expansion because he knows how much they matter to families like ours.  And I’m thrilled.  I have hope, but I am also stressed.  Living and loving a child whose circumstances are so uncertain has never been easy.  And doing so now when you feel like you have to fight for the very programs that have made such a difference is something I barely have time for in between all those medical appointments and insurance calls and nursing schedules and therapy visits.

But, you guessed it–I don’t take any of that for granted either.  

Please call your representatives and your senators today and tell them you want to protect both the Medicaid expansion and traditional Medicaid for all families who find themselves in need.   For so many families whose lives are already marked by hospitalizations and seizures and circumstances of life and death, let’s not make them marred and complicated and undermined and burdened by insurmountable insurance bills, poor or little access to healthcare, schools that may or may not accept their children, and policies that do not value the lives of their children with special needs.  Tell them it pains you to live in a world where we can’t take for granted that those most in need won’t go without.  Tell them how thankful you are for programs like Medicaid and all that they do.  As Heather Kirn Lanier said so eloquently, “my kid’s doing awesome, and it’s not just because of me.”  

It truly takes a village to raise any child.  Will you be part of our village?  It’s a motley crew for sure, but boy, is it full of unexpected, underserved gifts.

 

 

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.

balloons
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.

birthday
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.

My resistance

The first year I was teaching in the writing program Lucia was diagnosed with Aicardi-Goutieres Syndrome just a month after her first birthday.  I remember that despite the cake and the guests, there was a somberness to that first birthday.  Lucia couldn’t eat the cake we made, because she’d just begun feeding through a tube a few months prior.  We worried that she’d spit up violently during the party like she often did or that she’d scream in pain most of the time.  But mostly we felt intent to celebrate because we didn’t know how many birthdays we’d have and we were desperate and determined to have that first one even if it wasn’t perfect.

10988538_10155114051745408_1238587484990953728_n
Lucia’s first birthday party.

Later that summer I began to wonder what God was doing.  

I’d spent years doing research in China studying foster families who raise children with disabilities; disability in China had become so unexpectedly a professional, academic interest.  And then we had our own child with special needs and it all felt a bit too close for comfort.  People wondered about the order of things: surely you planned to study disability because of your own child?  No, it was the other way around?  They’d shake their heads disconcertedly, unnerved, perplexed.  It felt reductive to presume God had been equipping us in China to be Lucia’s parents or a bit simplistic and crass to pronounce that Lucia’s disability and our relationships with families in China had all been a part of God’s plan, but it was also hard not to see it that way either.

But somewhere along the way, I began to embrace what God was doing even if I didn’t gully understand it.  I began to dream that summer about a writing course about disability, but would students want to take such a course, I wondered.  When we develop our writing courses our directors always encourage us to get inside the minds of 18 year olds arriving at college, and so the most popular classes are on madness, New York, extra-terrestrials, and film.  Would a course on disability really be something freshman students would care about?

I’m not sure how popular my course has been, but every semester, two groups of twelve students walk in the door.  Many of them come because they have a family member who has a disability, and they want to understand and talk about it.  Some of them are just curious.  I’m sure for several of them, my course wasn’t their first choice and they just ended up there by chance.

But I try to make the most of that chance.  

The course considers disability as a form of diversity, a form of difference, and challenges the students to think beyond what they thought they knew about disability to reconsider how disability can teach us more about what it means to be human.  At an elite, ivy league university, the thought that people with intellectual disabilities might be insightful when it comes to our knowledge about humanity it a particularly challenging, counter-cultural thought.  For some of my students that dissonance, having a brother back at home who struggles to speak because of his autism, while they are thousands of miles away, toiling for the mere self-improvement of their own mind, is nearly too much to bear.  During a routine writing conference, one such student broke down and told me, “I just had to take your course.  When I look at all the ones on campus, it is the only one that seems to matter.”

I am not a miracle worker, but I do try to offer those students shelter and companionship within the world of academia.  I know just how inhospitable such a world can be to the daughter I love most, the daughter who has taught me more about myself, life, and God than nearly any other human being on the planet–and yet to so many, she is broken, disabled, lacking.  Together with twenty-four students each semester in this small, windowless classroom, we encounter just that kind of prejudice and exclusion toward people with disabilities, and I invite them to see otherwise.

What happens each semester is powerful.  

Not only are there brave, open-minded students who have little contact with people with disabilities but come because they want to learn, but there are students with disabilities in my classroom who find that they are not alone and they are valued.  There are students who leave impassioned to work with and learn more about people with disabilities even though they came in somewhat hesitant.

And at the end of the semester, when I have the students write narratives and Op-Eds about what they’ve learned about disability, I am overwhelmed.  At the end of a semester of rigorous academic writing, they are invited to share their hearts, and I sit there with my coffee and my computer, humbled and honored to be invited into their beautiful, painful lives.  So many students have written about how religious leaders have been so limited in their understanding of disability, hurting their family members, denying their humanity.  So many have written about their own struggles with learning disabilities or mental illness that they’ve often kept to themselves on a campus that doesn’t have time for any inkling of weakness.  Still others find the language of disability and difference a provocative opening to reconsider their experiences of race, class, gender, or body issues.

Every semester these disability narratives blow me away.

I learn so much from my students.  Indeed, it was with that first class that I began to write about my own experiences–“I’m Not Sorry” was my disability narrative that I wrote alongside them, because I told them that I couldn’t ask them to be so brave if I wasn’t willing to try, too.  These students have made me realize that the collision of my personal and professional life is both a gift and a responsibility.  As I read over these narratives this past week, I realized that students leave my classroom better equipped to appreciate what is sacred in people who are different from them.  And the hope that welled up in my heart when I read those narratives was distinct and surprising and so thrilling, because these students will resist attempts to belittle those who are different and those with disabilities.  I know they will.  These students will use their knowledge for good.  It is because of these students that I can’t help but find purpose in my life and Lucia’s life; the opportunity to serve them and to grow alongside them is just too precious, too unique.

247211

A few days ago, I snidely posted the following words to my social media account,

“Apparently there’s an inauguration today. Meanwhile, I have rearranged my office for maximum coziness while I get to read the exams where my students explore what they’ve learned about disability and difference over the course of our semester. How’s that for a protest, Mr. Trump? Three semesters (and counting) of students who will value and advocate for people with disabilities: we will make America great with or without you.”

So you see, this class, while it’s not overtly political is a distinct act of resistance in a world that is far too close-minded, cruel, and careless when it comes to the lives of people with disabilities.  It’s resistance that comes from knowledge and hope and love.  It is the resistance that I choose and that has chosen me.  And I will carry on because just a few years removed from Lucia’s first birthday, I no longer question God at all.  Rather all I can do is thank God for God’s incredible vision and a life so humble and yet, so grand.