Category Archives: Uncategorized

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.

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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.

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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

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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!

New Intelligence

This just in from my sister, and to think I was just throwing a football out on the quad this afternoon bemoaning #4’s retirement…there may be hope?  See what you think.
Brett Favre

If Green Bay Packers were in need, Brett Favre might think twice about retirement

Updated: April 9, 2008, 6:09 PM ET

GULFPORT, Miss. — If the Green Bay Packers are ravaged by injuries this season, Brett Favre might consider returning should the team reach out to him.

“It would be hard to pass up, I guess,” he told the Biloxi (Miss.) Sun Herald. “But three months from now, say that presents itself, I may say, you know what, I’m so glad I made that decision. I’m feel very comfortable in what I’m doing and my decision.

“Yeah, I can probably be up there doing that and playing, but again, I don’t know. It’s only speculating. I think the world of that team. I had a lot of fun, not only this year, but over my career.”

But if Aaron Rodgers went down with an injury?

“Aaron has fallen into a great situation,” Favre said. “And if that opportunity presented itself and they did call, it would be tempting. And I very well could be enticed do it.”

Favre understands the kind of challenge he would face should he opt to go back to the NFL after ending his record-setting 17-year career. And he made it clear he is not changing his mind at this time.

“But to think that if they called me in October and told me, ‘Hey, we need you this week.’ That would be hard,” Favre said in a story that appeared on the paper’s Web site on Tuesday. “I’m sure mentally, I would be refreshed. I’d be away from it for a long time. But mentally versus physically, the last thing I’d want to do is go up and it’s ‘Oh this is great’ and all that stuff and me be excited and then just flop.

“You just can’t show up and play.”

There has been a steady flow of speculation that Favre would have a change of heart in the wake of the March 4 announcement the league’s only three-time MVP was retiring.

“I guess the best response would be, right now no,” he said of a possible return to the game.

Favre added he would not return unless he was in shape.

“It would be hard to go up there at 38. It was hard to stay in shape. I say that, I worked out and I worked out hard,” he said. “Week in and week out, I was just drained. Finally, for the first time, I felt, not that 38 is old, but I looked around at practice and these guys are bouncing around. And I practiced every day and all the time people would ask me … `How do you do it? Inside I’m saying, ‘I have no idea.’ It’s a struggle.”

Copyright 2008 by The Associated Press

This story is from ESPN.com’s automated news wire. Wire index

“Davidson slays Goliath”

This was the title of the Charlotte Observer article after Davidson came from behind to beat Georgetown in the second round of the NCAA tournament on Easter afternoon. Most of you know that I went to Davidson so there couldn’t have been a better Easter treat after a full morning at church; I was wringing my hands the whole game, though! In an ironic twist, Davidson will advance to play none other than Wisconsin, the state of my birth, on Friday. That might turn out to be the real slaying if Davidson can pull another one off, which I sure hope they can.