Category Archives: writing

Please call your senators TODAY

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

But Senators are listening to their constituents.

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

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

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

And thank you for all your support!

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

 

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.

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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.

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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.

What if it’s all ministry?

As I drove into work the other morning listening to a podcast, a woman on the other end proclaimed that time is in some sense the great equalizer–no matter who you are, from the president of a country to a mother of twelve, you only get 24 hours–you can’t stretch it or exceed it or reform it.

Oh, but you can desperately and fruitlessly try…

As I’ve been finding myself at some of my limits in terms of time and energy and motivation these days, I’ve done the one thing I’ve urged my students not to do: I’ve turned inward, convinced that I’m not living up to expectations.

But whose expectations? I’ve begun to wonder.

I have realized these past few days (with some help from my spiritual director) that my own expectations have crowded out my good work as I hold a hierarchy of ministry in my mind.  As someone who has aspired to be a missionary and who has lived in abandoned bars and alongside drug addicts in Puerto Rico, sought to live in solidarity with migrants in Mexico, and slept on the floor of Chinese orphanages, I’ve always had this unspoken belief that the more uncomfortable you are, the more meaningful the work is that you’re doing.

And that’s honestly worked okay for me, because I have a high tolerance for discomfort.  I suppose I consider it one of my spiritual gifts, that instead of being repelled from what’s different, I’m drawn into cross-cultural conversation and challenges and dissonance.  But my life is not the hearty picture of discomfort that I once imagined it to be these days.  Despite those limited 24 hours, I feel the need to do more, to give, to reach out, and I struggle with the limits I experience and my finitude.

But I’m learning a couple of important things little by little.

I’m learning, for one, that one person’s discomfort looks quite different than another’s.  And I’m realizing that the ministry that God has for me may look different than what I imagined for myself.  I’m realizing that the wide breath of ministry God has put before me–ministry with my daughter with disabilities, ministry with my students, ministry with my congregants, maybe even ministry through my blog–may have gone unrecognized, especially to me.

You see, I’ve always taken that verse in the Bible very literally about selling all your stuff and following Jesus and felt pretty crappy that I still have stuff.  And part of that is really good, I think, because what I find so challenging and compelling about that verse is the reminder that aren’t people that are made for the things of this world.

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Rich young ruler (Mark 10:17-27) imagery.  Photo credit.

 

But what if it’s all ministry?  

I always tell my students and my colleagues that I want to imagine a world of abundance, a world in which everyone can succeed and thrive, because I really believe God to be a God of abundance.  But ministry…the world as chocked full of ministry, relative only to us, but wholly instituted and appreciated by God?

Well, that thought, that reality, is blowing my mind.

When I realize that I can’t sell all my stuff because my daughter needs feeding tubes to live and standers to make sure her hips don’t come out of socket and a pump to keep her alive overnight and seizure medication, it’s rather black and white and shortsighted and unfaithful to assume that I can’t be faithful to God because of all of that.  Those confines fail to reflect the love that God has grown in me for this child with disabilities, the theology that God has granted me to call Lucia good and perfect and really believe it, and the ease that I have and have always felt with people with disabilities.

That must be ministry, too.

As I looked around my life yesterday afternoon–as I walked back from ice cream with the first generation  and low-income college students with whom I’ve spent the past seven weeks, and with whom I’d grown so thoroughly–I realized some people might call that classroom one of real discomfort.  As I reflected on our little church that is a bit messy and inhabited by very varied abilities and ages and quite a few folks with special needs, I realized that some people might find that kind of worship truly arduous.  And as I thought about my writing–writing that works to connect up all these disparate avenues, foster families and China and faith and academia and caring for a child with disabilities–I realized that I’m still one messy, drawn-into discomfort individual, but I simply don’t experience it that way.

I realized that even as I’ve been fighting for a ministry that’s meaningful, God has been equipping me in the one that’s here.  I wondered in that moment if the choices I’ve made for my life aren’t so much right or wrong as tied into this purpose that may flaunt my expectations but dig deeply into the gifts God has instilled within me.  And I wondered if perhaps the greatest discomfort I’m feeling about the challenge of being here and doing all of this isn’t the very discomfort that God has for me to grow within in this season.

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God’s majesty in Yunnan, China.  Photo by Evan Schneider.

As I walked back and the wind rustled through the trees, I thought I heard a whisper, “Well done, good and faithful servant.”

And for the first time in a very long time, I think I started to believe it.

That little pause

I’ve probably let you know in spurts that sometimes it feels like summer, the presumed magical pause for many of us, has been on overdrive over here.  With summer teaching for me, makeup medical appointments for Lucia, and moving for the three of us, it’s easy to see where the time has gone.

I’ve been blogging about this book draft that I’m eager to get out to publishers, and I’ve been a bit critical of myself along the way.  You see, I wish I’d had it out to publishers like in June.  That was really unrealistic, but you know how when you just want to get something off your plate and out into the world so you can move forward with other tasks and ideas?

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Photo credit: Terry League.

But yesterday, with the last class of the semester complete, no meetings on my schedule, and lovely light ahead of me, I had a free morning.  And instead of cramming it with burdened and anxious writing, I let my mind wander.  A colleague of mine had suggested another scholar who could be an interlocutor for me on the ideas of vulnerability, kinship, and need that are shaping my book.  And so I sat there for several hours without an agenda–I read and I wrote, dialoging back and forth with this other scholar about my ideas, without an end in sight.

And it was good.

It was good to be creative, to let go of the aims and simply pursue the thoughts and the ideas and trust that they would matter.  I think I eventually ended up with some insights that will help revise the little parts of my introduction that need revision.

But maybe not.

And the strange math of the week is that I still feel that I’ve accumulated something really valuable.  It’s the type of wild exploration that I’ve been begging my students to risk doing, despite the confines of their cramped summer semester.  “Dare to dream big,” I’ve said.  “Go for that big idea, take risks,” I’ve goaded them in their writing.

But I’ve got to live by my own wisdom.  I’ve got to carve space out for these creative pauses that excite, entice, and beckon without ulterior motives.  It’s the stuff of believing in the creative process, I think, but also believing in yourself.  Trusting yourself to manage this precious time that you’ve been given and valuing that good ideas need room to breathe, that a lot of the best stuff seeps out of us when we’re willing to work for it, wait for it, wrestle with it, and knead it a bit.

Another thing that I’ve been telling my students that I think goes hand in hand with these pauses is urging them not to turn in upon themselves and cower when the world rejects them.  I’ve told them that their worth can’t come from these things they think or produce or accomplish but rather who they know, trust, and love themselves to be.

And suddenly it makes sense to me.

If I truly believe that, too, then I’ll value and allow myself that morning in a coffee shop to simply think and wander because I’m not the sum of my accomplishments or my successes, but rather an artist whose thoughts and wisdom and goodness need to be lived out daily.  While I tell my students stuff like this all the time, I think it’s been a long time coming for me to admit that I’m a bit of an artist when it comes to words and ideas–that I’m a thinker and a dreamer, someone who likes to spin and sew and create with thoughts.

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Light pouring into my empty office in our new house.  My photo.

So thank you, dear students.  It seems I’ve learned something really valuable from you this semester.  It seems I’ve been reignited with the fire and excitement that comes from thinking.  It seems I’ve been given the freedom to explore again rather than put everything I do to a purpose, a publication, a deeper success.

And that feels good.

Thanks for giving to me this small, sweet truth.  And I’ll do my very best to honor it with a pause every once in awhile and believe in myself just a bit more.