Tag Archives: students

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.

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.

Virtual coffee date

If we were having coffee this week, I’d let you in on a few things…

I’d tell you that it’s already been a week packed with doctors visits and hospital tests like usual, but something has shifted.  It shifted when I realized that despite checking “no” to all the tasks listed on Lucia’s 24-month questionnaire, I also got to check “no” to the question, “does anything about your child worry you?”  In the midst of moments where I could have been discouraged, I counted myself so blessed, because of the much needed perspective our daughter with special needs brings to our lives and my faith.

(Here’s another great perspective on children with disabilities I saw this week!)

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Countryside in Yunnan, China. Photo by Evan Schneider.

I’d also let you in on how incredibly thrilling it was to find an email in my inbox this morning entitled, “你好 from China” from a former student who with her broad interests in Native American culture, architecture, and history, I never thought would quite end up there!  She wrote,

“Also Professor Raffety, China is wonderful. Granted there are many moments of ‘ahh, what am I doing’ but those are minimal in comparison to my many moments of ‘ahh, so much goodness.’ My co-workers, new friends, are brimming with patience, generosity and a eagerness to converse and teach me. I’m sure you have experienced many of these same moments. And of course, the food is new, but oh so flavorful.

I hope all is well with you and your family, your faith and teaching.”

I’m tickled not just because she’s having this encounter with China that I once had that was so powerful and earth-shattering and meaningful but because there’s this subtle affirmation of my call that I also read in her generous words–some mutual recognition of something more than just teacher and student, something more like our vocational and spiritual lives intermingling for something greater.  She had me musing this morning, during a season when I’ve been lacking a bit of pedagogical inspiration, “See this is why I can’t not teach!”

And finally, I’d tell you that I really should be writing my sermon instead of this blog post, but that I think it can all pretty much be summed up in these words from Glennon Doyle Melton that speak to the curious balance of conviction and humility that it takes to live the Christian life:

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What are you up to this week?  Grab a cup of coffee and let me in on it!