Tag Archives: isolation

Telling my story

The other evening a few of my friends indulged me in asking about my summer research project on disability and joy.  I yammered on a bit about my excitement about what I might learn from families with persons with disabilities who are nonverbal, and then my husband spoke up.  He talked about the presumed extremes and edges for families raising children with disabilities, especially children with rare and life-threatening conditions like ours.  “Either you’re at one extreme, devoting all your time and energy into fighting this disease and finding a cure, or you’re slumped over on the couch, defeated and depressed, resigned and remorse that life is so cruel and painful.”

Of course, I’m paraphrasing.  Although my husband has spoken of these extremes often, down to the very way he first framed our public announcement of Lucia’s diagnosis, I’m not sure it had ever occurred to me how these hostile extremes prey upon and distort the reality of life as we know it with Lucia.  Why didn’t I think to frame my project this way, I thought?  After all, isn’t it this insidious framing that makes the pairing of “disability and joy” so presumably unexpected and rare?

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Part of the announcement we made about Lucia back in 2015                                        (click here to link to the WHYY story).

These stereotypes about parents of kids with special needs, made it and continue to make it really hard for me to open up as Lucia’s been in a really trying and uncertain period of feeding intolerance as Lucia’s been in a really trying and uncertain period of feeding intolerance. In our first ethnographic interview for the project this week, one of the parents spoke eloquently about the burden of communication that’s placed on she and her husband to keep the world appraised of her child’s medical status and progress report.  A few weeks ago on a Sunday where I’d finally resolved to open up about how overwhelmed my husband and I felt about Lucia’s feeding difficulties, I quickly found myself sandwiched between two platitudes–the one about God giving special kids to special parents and the other about kids being able to overcome their disabilities with hard work, and I just wanted to scream.

When well-meaning friends jump so quickly to wishing life was otherwise for us and striving to help we and Lucia overcome all her challenges, I feel shortchanged and silenced, because it starts to feel like our life’s everyday difficulties come as such disappointments to others, and then I feel the burden of having to help others find narratives of progress amidst our very chronic, circular story.  Of course you wish the best for us, but when that comes at the cost of your narration and my silence, I can’t help but feel you’re wishing away so swiftly and expertly the difference between us, without acknowledging that that difference is where my family and I live.  I know it may sound harsh, but in these moments I often feel as though people would rather experience my family’s thriving or failing as a spectator sport, watching from a distance, finding some sentimentality in it, and then going back to their regularly scheduled lives, buffered by that comfortable (manmade) chasm between us and our seemingly very different realities.

I’m aware that neither my humble ethnographic project nor my blog posts can suddenly or significantly alter the cultural scripts surrounding families with family members with disabilities (let alone people with disabilities, especially people who are nonverbal, but that’s for another post…), but I do believe there is great power in helping families tell their stories as they want them to be told.

When I came home from church that evening a bit emotionally battered and bruised, I thought about why those conversations stung so much.  They stung because the truth was that amidst great hardship, I didn’t feel that things were just hard on the eve of Lucia’s fourth birthday, I also felt exceedingly grateful.  And so I began to write parts of this post and I resolved to try again.  Yet another Sunday, I told my story with its mix of grace and hardship and beauty and pain and joy, oh yes, deep, resounding joy, to a few members of another family during coffee hour.  I remember the concerned look on their faces, their heads nodding, I don’t remember much of anything they said, but I certainly remember how I felt.  To be accepted as I was, not really by their words, but by their nods and their faces and their hearts, was like a balm to my soul.

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Resounding joy.  My photo.

They did me the honor and ministry of letting my story hang between us, but what may have been slightly uncomfortable to them felt so freeing and resonant and powerful to me.  I realized that I have tentatively decided to share my story on this blog over and over not always even so that others can understand, let alone feel better, but so that in this swarming world that buzzes and pulses and consumes and compresses my daughter’s life into sound bytes and platitudes and pity, I can simply hear my own voice.  I know it sounds selfish to put it that way, but perhaps the battle that parents with kids with disabilities are fighting is not primarily one against disease or difficulties but against the perception that their kids lives don’t matter or that their kids aren’t like other kids or their families aren’t like other families, because they can be summed up in stereotypes that pronounce their differences in cruel, inhuman ways.  The isolation isn’t primarily physical but social, one where you find yourself telling a story that should be yours but that either no one else wants to hear, or everyone else wants to narrate, resolve, and redress for you.

But stories always have more complexity, a life of their own, and depth beyond what we can ever imagine.  They’re just one more fabulous aspect of what makes us human–that we all have a story to tell.

Thank you for letting me share some of mine.  And thank you, most of all, for really hearing it.

 

 

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The Art of Living Abroad

 

Nanning's ultra modern and traditional landscapes side by side.  Photo by Evan Schneider.
Nanning’s ultra modern and traditional landscapes side by side. Photo by Evan Schneider.

It’s been nearly two years since my husband and I moved back from living in South China (how time flies!), but there’s rarely a day that goes by that I don’t think about the people, the place, or our life there.  Moving to a foreign country as a young couple had its growing pains, but ultimately it brought us closer together and is an experience that we treasure and hope to repeat someday with our children.

I have some friends and acquaintances who are getting ready to make the move across the ocean or halfway around the world and it got me thinking about what lessons I can draw from our own experience.  So, here are a few suggestions for how to make the most of that international living experience, which is definitely more of an art than a science.

My husband plays volleyball with the teachers from his college.  My photo.
My husband plays volleyball with the teachers from his college. My photo.

Find Some Structure

It’s essential when you arrive to start building a community, through which you can learn about the culture, and among which you can begin to build relationships and feel at home. When I was doing my fieldwork in China, my network of informants was free-floating and dispersed, so it really helped that my husband was affiliated with a local university for his work, through which we met a mix of Chinese professors, students, and even expats.  Finding a community–a housing complex, a company, a school, or a place of worship–that has some structure and rituals to it helps a lot when you’re struggling to learn the ins and outs of daily life in a brand new place and ensures that you won’t feel isolated despite the isolating experiences  you’re often up against.  Even setting up a weekly meeting with a language partner or a friend to explore the city can give you the motivation to get out there and get to know your new surroundings and help you feel more at home.

Communicate

Speaking of isolation, a great piece of advice I received from a couple before moving abroad and back was to be mindful that despite your commonalities you won’t be experiencing a new culture in exactly the same way.  It’s imperative that instead of assuming cross-cultural experiences resonate or rub against us in exactly the same way as family or friends that we allow for multiple feelings and interpretations of the same events and experiences.  When I was living in China, I often assumed my husband to be my cultural confidant who shared my frustrations, joys, and complaints, but that wasn’t always the case.  It really helped to talk through those disconnects and resist making assumptions so that we could be sources of support to one another in a challenging experience.

Even locals have to study the bus routes in Nanning!  Photo by Evan Schneider.
Even locals have to study the bus routes in Nanning! Photo by Evan Schneider.

Become an Anthropologist

Now I’m completely biased, but I think it’s also important to suspend judgment and try to look past first impressions when you’re getting to know your new country and culture.  Spend your time observing people, listening, and participating in life the way they live it.  If you consider yourself a student of culture, it’s also a lot easier to tolerate and maybe even embrace differences that might be initially repulsive or confusing.  As a student, you’re only responsible for asking good questions, applying yourself and learning to the best of your ability, and respecting your teachers, which is a wonderfully fresh and un-stressful way to relate to your new, and sometimes jarring, world!

On a trip to Hong Kong.
On a trip to Hong Kong.

Indulge

There will be times where you need a psychological or even a physical break from the fatigue of speaking another language, being a foreigner in a strange land, or adhering to customs and pleasantries that aren’t your own.  It’s important to take these much needed breaks so that when you are with your new neighbors in your new country you can be the best version of yourself.  For my husband and I that meant brief sojourns to Hong Kong every once in awhile, evenings every few weeks with expats, or simply alone time on our balcony where we allowed one another the freedom to speak candidly about some of our frustrations and fears.

Beautiful Guilin.  Photo by Evan Schneider.
Beautiful Guilin. Photo by Evan Schneider.

Explore

Don’t pass up the opportunity to explore your new country and culture while you have it.  My fondest memories of China are the weekends and weeks where I made spontaneous research trips to the countryside with new friends, and the trips to Southeast Asia with friends and to the wildest parts of Guangxi with family.  And I regret never making it to all the other places on our list–Harbin, Sanya, Cambodia, Thailand, and Myanmar just to name a few!  Exploring the country with new friends deepens your understanding of the idiosyncrasies of what it really means to live in that place, because there’s nothing like long hours spent on buses and trains to bring people together.  After all, the art of living abroad is about taking care of yourself but also taking chances!