Category Archives: Uncategorized

Words are not necessary.

Words are not necessary.

It’s not a finding in our research* just yet (although it very well may be), but the phrase the woman on my lectio and centering prayer app recites to me every morning to guide me into meditation and contemplation.  But even though she’s been saying it for at least months, possibly years, it’s only recently stuck out to me as a sentence that matters, because my life is teaching me to listen.

A quiet spot on the seminary campus.  My photo.

A few weeks ago when I was conducting a delightful visit for our disability and joy research project, an insightful informant asked me if I myself am satisfied with the approach that they’re taking to Lucia’s communication at her school.  It was a lightbulb moment for me.  Of course it makes sense that as a parent of a nonverbal (although I really prefer the term extra-verbal) child with disabilities in conducting this project, I myself am searching for greater meaning, greater connection, and better communication with my kid.

But I realized, as so many parents in our project thus far, that what I’m really concerned about are the efforts and abilities of those around Lucia to appreciate her extra-verbal communications.  There’s a tendency in our hyper-verbal culture to denigrate the extra-verbal contributions of people with disabilities or to spend all our time trying to make their communications like verbal people rather than appreciating them for what they are.  There’s a tendency to rank modes of communication, to prioritize certain modes over others, rather than truly listen.

But what I know to be decidedly true is that I love being with Lucia.  I talk sometimes when we’re together, but it’s never occurred to me that she doesn’t respond because she does, perhaps with a furtive glance, a sheepish smile, a dart in her eyes, a babble a chuckle, a startle, and more often than not, her silence is a gift.  If I was with anyone else (in fact my husband just complained about this a few days ago!), I’d feel beholden to insert words to bind us together, but Lucia reminds me that words are not necessary, and that putting them on a pedestal, even for writers and poets and perhaps especially pastors tends to deny the stuff that makes the words–the people, their presence, their silence, the mystery–meaningful.

In one of our very first interviews one of the mothers told us earnestly and assuredly that her daughter was a terrific companion.  And so is Lucia.  And if I could have one thing in life I think it would be that others could experience that, know that, believe it, rather than pitying or assuming that what Lucia doesn’t do defines or mars her ability to communicate.  The project itself comes from a deep conviction that we’re missing out on something about what it means to be human, because we haven’t learned to listen to people with disabilities, their families, and what it means to them to communicate.  We haven’t honed this way of being human that is valid, that matters, and that is unique.

With my dear companion and teacher.  My photo.

And so despite my introspection in that moment of research, to assume that I’m doing this project to make my kid a better communicator or to even tease out or enhance something that’s there but not just refined enough, would be antithetical to everything she has taught me and is teaching me.  Conversation if you think about it, communication, demands and relies upon silence and space to make its meaning–without it, it’s cacophony, chaos, babel, just words.  And it demands listening, attentiveness, paying attention not just to those words but to the space between.

In my love affair with centering prayer, I’ve found it so freeing to know that sighs to God are worthy, venerable, meaningful communication and that words are not necessary, not just to pray, but also for God to work.  But when I’m in spiritual direction sometimes I smart because I feel like I circle back to the same insights about God and faith over and over and over again.  Am I really growing if I keep coming back to the same lessons? I exasperatedly ask.  And then my spiritual director reminds me that growth happens in circles, concentric circles that wind their way, but toward depth, not necessarily great breadth or height or length, as the world imagines learning to be.

And so here’s Lucia, patiently, quietly, daringly reminding her mama that being different, being quiet, listening, and leaning in are good things in this world of competing, calculated, cacophonous communication.  If when it’s all said and done, she and the other families we have spent time with have only just taught us to listen, well, then we will have learned much more than we we started.  We will have found a depth to communication that we often slight and ignore, we will have found a dignity in difference that we so often dismiss or deny, and we will have found out not just some things about words but about the people who somehow teach without them, the people who remind us that our humanity is so much more than just words.

*I’ve been leading an ethnographic research project with families with children with disabilities who are nonverbal and we’re studying cultures of communication and joy this summer.  You can follow along with the research through some of my recent posts: Telling my story and  How it feels to be free. (And I’m sure we’ll publish something academic-y someday, too.)

Why I can’t give up…and I hope you won’t either

It was one of those weeks where you hardly knew where to look–between the plea deal with Michael Flynn and the North Korean missiles, I’m a little surprised people are even talking about the tax bill, but they are.

In fact, I’ve heard many, many people bemoaning its passage.  It’s been a wildly unpopular bill with the American public so it makes sense that the majority of us are disheartened that all the Republican senators line up and support it.

But I’ve also heard a lot of people talk about how tired and frustrated they are and how much they want to give up and throw in the towel.  It’s been a long, hard year; I’ve written about just how hard it’s been for our family, I’ve lost lots of sleep over these threats to healthcare (I’m up late writing this), and I’m really scared and worried, too.  So I can really understand if you feel like things may never change and it’s not worth it, and you just want to give up.  I think I know how you feel.

But we can’t give up just because things are really, really hard.  That’s why we have to fight harder than ever.

And I don’t know about you, but it’s not a matter of whether I want to give up or not.  I simply can’t give up when we’ve passed a bill that creates tax cuts by cutting the very programs that taxes are meant to fund and forcing the very people who can’t afford taxes to pay them.  I can’t give up when we live in a country where private health insurance doesn’t provide the things that people with disabilities and people who are sick need to live, yet this bill makes cuts to the very programs that keep them alive and give them insurance when no else will.  I really can’t give up when lawmakers vote to say they value tax cuts for a few more than health insurance for people who are poor, disabled, or elderly.  And I won’t ever give up, just as you wouldn’t, when my daughter’s health, life, and dignity are on the line.

A really wonderful reason not to give up.  My photo.

The problem when you or I threaten to quit is not just that those who are against us win, but it’s also that we buy into the belief that we’re all alone in our fight, that it’s not possible to win, because there’s not enough people who care, and that no matter what we do, we can’t make a difference.

But let me remind you that most people in this country didn’t vote for our sitting president, that worldwide participation in the women’s marches in January 2017 were estimated at five million people, that over the summer, you and your phone calls defeated threats to undermine and repeal the Affordable Care Act over and over and over again, and so despite what you may be feeling, 2017 was not just Trump’s or the Republicans’ year, but also a year in which the American people spoke up and it truly made a difference.  

You made a difference for my family and me.  

And time and time again, when I felt truly lonely and haggard and upset, your words and phone calls buoyed us to believe that it’s not just everyone for themselves but that we can and will and should care for those in need.

So please don’t give up.  

If you’ve read this far, I’m sure you know that this awful tax bill has to go to conference and a lot can change along the way.  So let’s make sure those changes protect Medicaid and people who can’t afford to pay taxes and graduate students and people with disabilities.  Let’s take to the streets again if we have to.  Let’s jam the phone lines and confront our members of Congress.  And build each other up.  Stand together, across differences, and make it clear that you stand with people in need.  Don’t let fear and isolation win out against the truth that we’re a people who can love and care for one another, who can do more together, with our rich diversity, than we can do alone.

Honestly, that will really stick it to them: a bunch of ramshackle, joy-filled activists who believe in themselves and one another.

Give up?  Me?  You?  Oh, we’re only just getting started.

**Please call your representatives tomorrow and tell them your story as to why this tax bill needs to be dramatically augmented!  Here are some great talking points about how important it is to save Medicaid that you can use, too.**



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.

Lucia and mama on a recent hike.  My photo.

What I Learned in 2016

Publicly 2016 has been a year that will go down as one of the most violent, tumultuous, and cruel.  I had been thinking of it that way myself, until I came across this article that speaks to some of the less covered triumphs of the year, and until I did my own year in review on the blog.

I was shocked to realize that it was only just a year ago that I began sharing Lucia’s story on the blog, and although this year hasn’t been easy, she continues to teach me more about life and love and God than practically any other human being on the planet.  She’s inspired a whole category of posts (22, make this 23, in fact) on disability, and she’s made me realize how valuable it is to share journeys of hardship and strength with one another.  Thank you all for letting me share!

As I’ve done many years before, here are some of the lessons I’ve learned from life and God and Lucia in 2016.  Follow along with me and find your own redemption in 2016.  Looking through these lessons always reminds me how emphatically present God really is in our lives, how far I’ve come in terms of my understanding of God, and of course, how much further I have to go.

Art credit.

Here’s to 2017!  May it be bright, peaceful, and chocked full of spiritual wisdom and hope for all of you.

  1.  I’m not sorry–nope, not one bit!
  2. Sometimes the faith of others can carry you through.
  3. We are all needy.
  4. Forgoing security for faith is, well, what the life of faith is all about.
  5. Modern medicine doesn’t have a monopoly on what it means to live a meaningful life.
  6. The Church needs people with disabilities!
  7. I have learned to hope again.
  8. It’s all ministry.
  9. Luck’s got very little to do with it.
  10. I embrace difference as a spiritual discipline.
  11. Conviction is a luxury.
  12. Who could have imagined life would be this grand?
  13. Let’s not make grief unpalatable.
  14. Joy often comes in the midst of despair.


P.s. Here are some lessons learned and looks back at previous years on the blog if you’re curious:

2011, 20122013, and 2014


Ten links for your weekend

Summer in NJ is really beautiful.  Photo by Evan Schneider.

We’re off to another apartment this weekend, and so far, the subletting has been really great–a great, great reminder that as Leo Babauta over at Zen Habits writes, “All You Need, You Already Have.”

Here are some other great random tidbits for your weekend:

Is Sichuan cuisine losing its spice?

All things feminist, internet, and fun. (From my favorite blog, A Cup of Jo)

This is an older article, but still relevant I think.  Do you practice slow parenting?

I don’t know if this is reliable, but supposedly you can plug any month of the year or any place you want to go into this search engine and figure out the best time to travel.  One of my friends is in Santorini right now and according to the engine, she’s got it right!  What city are you headed to in June?

The disturbing therapy gap when it comes to race in America.

Do you keep lists of baby names for future babies?  My sister just found out she’s having a boy, and so far there’s not much new on the most popular baby names of 2016 (Olivia for girls) (Ezra for boys), but I love to keep tabs on what’s trending.  What do you like?

Deeply moved by this prophetic (Presbyterian!) voice in Congress.

I appreciated the honesty here.

Our pastor has a podcast!  This week’s episode is a little long but covers a great range of topics (and they have lovely voices).

Happy weekending!








There are typos in my dissertation

When I finished typing the last few words I set aside my dissertation for about a week.

I was afraid to read it, because I knew there would be typos amidst that sea of words.  It’s just impossible, not matter how many proofreaders, no matter how much time spent, to produce something perfect.  And while I know that, I didn’t want to experience the pang of how those mistakes would mar the crisp, white pages.  I wanted to believe that there was some way that all my hard work would pay off with perfection.

Like I said, that lasted about a week, and then I had to face reality.  I read through it, in preparation for my dissertation defense, and there were many typos.

And it was still okay.

One of my last dissertating sessions.  My photo.
One of my last dissertating sessions. My photo.

In fact, the typos reminded me that I’m not in pursuit of something perfect, but something human, something meaningful.  What’s more, I could see beyond the typos to those people in China who changed my life.  As I read, I was humbled to see and know that despite the congratulations that would be heaped on me and only me after the defense, this dissertation, was truly the work of many hands.  The typos reminded me that despite the perfection that’s so idolized in academic fields, we academics are imperfect people who rely heavily on the minds, kindness, and generosity of others to produce our knowledge.

There were moments where the typos made me wonder whether I had any business defending a dissertation toward a Ph.D., but I’ve also realized that it’s great to recognize that while you have learned a lot, you still have much more to learn.  It’s not so bad to see typos and be humbled and recognize that you’d rather be transformed and human and vulnerable than perfect and magnificent and independent.

This Thanksgiving, I’m thankful, in all circumstances, for typos, for friends, for family, for foster families in China, for dissertations, for new journeys, for imperfection, for growth, for love, for peace, and for God.

What about you?

Dreaming boldly

Still can't believe I've been here.  Twice.  Halong Bay, Vietnam.  Photo by Evan Schneider.
Still can’t believe I’ve been here. Twice. Halong Bay, Vietnam. Photo by Evan Schneider.

Perhaps all of my original thoughts are being zapped up by my dissertation writing at the moment.  Or maybe there are just some really inspiring things on the internet as of late.

Whatever the case, this Huffington Post meditation from Sir Francis Drake really struck a chord with its admonishment not to limit God by dreaming too little.  Such a reminder has been instructive for me in the past when it comes to praying audaciously for China, or in recognizing how God desires to dream with me.  And in the age of helicopter parenting and facebook bragging, it’s so poignant to realize that dreaming boldly for my daughter is always a good thing.

What I like most about these words from Drake is the refrain, “Disturb us, Lord,” because they remind me that it is God who places those wild dreams in our hearts and who can do immeasurably more than we ask or imagine.

May you take heart in these words this morning and invite God to “push back the horizons of your hopes and your future.”  Amen.


Disturb Us, Lord by Sir Francis Drake


Disturb us, Lord, when
We are too pleased with ourselves,
When our dreams have come true
Because we dreamed too little,
When we arrived safely
Because we sailed too close to the shore.


Disturb us, Lord, when
With the abundance of things we possess
We have lost our thirst
For the waters of life;
Having fallen in love with life,
We have ceased to dream of eternity
And in our efforts to build a new earth,
We have allowed our vision
Of the new Heaven to dim.


Disturb us, Lord, to dare more boldly,
To venture on wilder seas
Where storms will show Your mastery;
Where losing sight of land,
We shall find the stars.


We ask you to push back
The horizons of our hopes;
And to push back the future
In strength, courage, hope, and love.


This we ask in the name of our Captain,
Who is Jesus Christ.


Night Writing

I promise not to report on my health status at all times (after all, what could make for a more boring blog?), but suffice it to say, this weekend did not bring much more healthiness to our little family. With my husband and I both feeling sick last night, the last thing I wanted to do was go into the Writing Center to work an extra March shift.
This is my third year working at the Princeton University Writing Center, and I worked at the one at my college for three years as well, but last night reminded me that given the right student, it never really gets old.
I’m not one who feels gifted as a teacher, but tutoring writing can be wonderfully collaborative. That’s what I love about it- the ability to talk through ideas together, to think together, and even write together. When I’m lucky, I get the sense that I have truly been helpful to someone else, whether just by calming his or her nerves or allowing she or he to think differently about a topic, perhaps find some much-needed confidence and inspiration. Last night was one of those nights, and despite my coughing fits, it was greatly rejuvenating.
Just thought I’d share… Now, what is rejuvenating to you?

From the Porch

A porch, not mine, but one that is quite serene, I think.

Okay, so our front porch looks nothing like this, but the point is, that we have one. And that is where I got to sit today for about thirty minutes in the almost 60 degree weather to do some reading for class, albeit on a Friday afternoon, followed by some devotions. And that got me to thinking, that one of the few perks of being sick this week, is this command from on high, to slow way down and appreciate the budding tulips my husband has planted, the beautiful weather, and the opportunity to get some studying done on a Friday afternoon even if it is at the mercy of being sick. It is also encouraging to see signs of spring, making me feel like I can’t be sick too much longer, and I suppose I can’t stay away from blogging much longer either. It’s good to be back.

Frida, finished papers, and the countdown

Frida Kahlo
I just wanted to comment on some of my highlights from the end of the year:
5. Evan’s birthday celebration last Friday which included a group lunch jaunt to Hoagie Haven, a lovely dinner at Blue Point Grille, and a visit to the Frida Kahlo exhibit at the Philly Art Museum.
4. Finishing all my papers early–being almost officially done with seminary!
3. Opening all these lovely wedding presents…
2. 21 days until the wedding, 13 days until graduation.
1. Some much needed, much appreciated relaxation before the mayhem sets in!