For those of you missing the China posts, I miss China, too! I wrote a poem about it:
It is a spring morning in central Jersey.
And yet, when I emerge from my car in the parking garage, construction whirling in the distance, I am distinctly reminded whereby the crispness of this air, the particular squeakiness of these birds, and the unmistakable mix of blacktop and freshness of the same season in a city in South China.
Said city holds no particular place in the Chinese imaginary when it comes to urban notables; in fact, it conjures adjectives like “backwards” and “primitive” from the mouths of cabbies across China. But five years removed from my life there and cobbled sidewalks encased from endless traffic by massive palm fronds, I wonder if quaint is an adjective that one can put toward a city of seven million for which I am undeniably, yet foolishly homesick.
I recall how dodging the passersby dotting the sidewalk, I would sprint on a morning such as this, down to South Lake, and feel it my quiet oasis. In China, I learned the comfort of never being alone.
Despite the traffic that roared across the highway carving the lake in two and the never desolate state of the footbridge, pretending to climb but nay drudge up it in the dank humidity was my respite, my triumph.
Alongside the elderly people swatting their arms and strolling the banks or the young men in track suits with more ambition than athleticism, I felt deliciously inconspicuous, enfolded in the lush, yet urban landscape.
When I long for China, I like to think it’s not merely as a vagrant or a tourist but as an adherent and an old friend.
You see in China, I learned the distinct pleasure of anonymity alongside the crowded comfort of never being alone. There’s something pleasurable in recollecting that those runs along South Lake were never quite my own but belong dutifully and contentedly to the city they call Nanning.
I had this one fear when I realized that Lucia had Aicardi-Goutieres Syndrome and would likely live a rather unconventional life. It wasn’t that she would be different–as an anthropologist (and a minister), I’ve learned to embrace difference, and the foster mothers I studied in China had enumerated the ways in which people very different from us often expand our very knowledge of ourselves and what it means to be human.
But I whispered to a few people and I worried in my heart of hearts that while Lucia might be able to receive love, she might never be able to give or express it.
I don’t think I worried it selfishly (although certainly naively), but I just thought about my own life and how much I’ve learned and received and grown by the very challenging act of learning to love others–not just receiving love–and I guess I couldn’t quite imagine, amidst days on end of shrieks of pain, colossal brain damage, and multiple disabilities, what that would really look like for Lucia.
On the eve of her first day of school and just past her third birthday, however, I not only finally see how much I underestimated her and God but how much a person can say without much purposeful movement, without words, or without rolling or crawling or walking or talking. I underestimated how much joy can emanate from such tiny, immobile person–how by the age of 3 Lucia has taught me more about love than I’d learned in maybe three whole decades–how her way of loving would change everything I thought I knew about God and life and love.
“Do you think she knows you?” people will ask my husband and me, and there are things we will tell them, like how she cocks her head and her eyes focus for just a split second when she’s really listening or when perhaps her limited vision has allowed her to take in some glimpse of the world. Or how she recently started to erupt into fits of giggles when she hears her daddy make farting noises or how a slow smile seems to creep over her face when my husband or I set foot upon the creaky boards in our noisy house. Or how there are times when you take her in your arms and she seems to wrap her rigid little arms around you in a way that makes you feel known and held and real.
But it’s all very hard to tell or describe, because you can’t break joy or love down to a science. How do you know your child loves you? You just do. There’s a feeling between you and it doesn’t go just one way when it’s felt–it’s a shared cultivation, this business of living and being loved. And how I ever thought it possible for that love to be unrequited now feels so distant and so foolish and so naive.
And so I can’t really find it in myself to worry about how Lucia will do when she goes to school. Lucia will do just fine. We know she will grow so much by being around other kids and by learning and by moving–she’ll thrive in a social environment, for sure. But those people around her–I’m almost more excited for them. Because they will be loved with a joy so deep and so profound and so beyond any of our imaginations that they will grow in these ways that none of us ever imagine to be possible.
Lucia reminds me how much more there is to be learned from those who seem the least capable, the most impaired, the least adept at the things in life and that there’s something of God’s love in every speck of our beings however imperfectly or perfectly made we may appear.
We love because God first loved us. Every single one of us. Even my Lucia.
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.
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 fully 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.
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.
However, as we drove home from the hospital after a successful surgery with Lucia yesterday, I reflected that in so many ways this attitude of understanding our children’s lives as cause for celebration rather than burden is bolstered by the support systems we share. My husband and I are so thankful to live in a state that invests in Lucia’s care, to have insurance, that despite its shortcomings, generally covers all that she needs, and to have friends and family that love Lucia unconditionally, pray for her, and care for us!
It is difficult to imagine how we might view Lucia’s disability if with every medical intervention we had to also sweat the finances or insurance coverage or if we had to worry that someone caring for her didn’t have the proper resources or training. These are the very important supports that often go unstated in the words I write about Lucia, and this morning, I am thankful for them. I am also deeply prayerful that families who don’t have such support will find it in gracious lawmakers, caring social workers, more humane insurance policies, and more state programing for kids and families with special needs.
The pending election in this country may seem positively incongruous with this month in which we aim to practice gratitude by naming our blessings when so many, like the ones above, go unacknowledged. But this morning, I began to wonder what it might look like to practice a spirit of gratitude despite the strife and division in this country and the world.
How would our attitudes toward one another shift if we were to focus our attention on all that we in America have to be grateful for, what we are grateful for in the candidates we support, or what we are grateful for when it comes to the provisions of our country and state (rather than only so very critical of)? Thanksgiving invites us to pause and offer God the praise that God is due, and as we can see, this in and of itself, in an election season can be very powerful and countercultural! Could such thanksgiving invite us to more civility and less hate? Could it remind us of our common human needs, desires, and goodness? Could it point us back to God when our human ways are frail and flawed?
I realize, perhaps more personally than many this election season, how dire and in jeopardy such supports for people with disabilities are, and I do not discount these challenges, but I wonder if gratitude is still an appropriate way to reflect on the hardships in the midst of the blessings. After all, God has taught me so much about how to experience blessings despite the challenges as we’ve gotten know Lucia!
So this morning, I am thankful for…
The amazing nursing care provided through Medicaid in the state of New Jersey, for my daughter, Lucia, and the opportunity for her to attend a school come February that will meet her special needs.
Students at a historically black college who protested a KKK speaker in their auditorium and people protesting a pipeline that will disrupt Native American lands. Thankful for those who lift their voices, use their bodies, and engage in brave, peaceful protest for those in need in this country.
A democratic country with peaceful elections, robust debate, and freedom of speech.
All those who love Lucia so well, celebrating rather than mourning or pitying her life.
What are you thankful for this morning? What countercultural words do you have this election season? Feel free to link up with this post and write your own #thanksgivingforelectionseason.
Yesterday a woman who works at Barnes & Noble walked right up to Lucia and greeted her–she knew her but she didn’t know me. One of Lucia’s favorite nurses, determined that she wouldn’t become isolated with our recent move to the country, regularly takes her on outings to book stores, walking trails, parks, and libraries, and this woman had read books with my child many times!
One day when I was working from home and a friend stopped by the house, Lucia was out on one of these excursions unbeknownst to me. The friend was a little disappointed.
Lucia has her own social life, I chuckled. Who would have imagined? I thought.
Indeed, I think it’s easy given Lucia’s diagnosis, physical, and cognitive challenges to presume that she lives a limited life, but this is so far from the truth. Precisely because we’ve been forced to rely on nurses, doctors, and therapists to help us care for our medically complicated child, Lucia’s social network has certainly widened beyond the typical two and a half year old.
At the outpatient facility where Lucia does her therapy she’s not usually interested in toys, but she always cranes her neck to see the other children running and jumping and shouting. This morning Lucia’s nurse, having just returned from China, brought her a Chinese children’s book and Lucia cocked her head to listen as the two of us yammered on in Mandarin about her trip. Several months ago, one of her nurses put her hair in Jamaican braids!
I think about the incredible richness of the life Lucia leads and I am in awe. Our minds, our predictions, our perceptions of life with disability often fail to see beyond the presumed downside of dependence, medical necessity, and constant care. But Lucia’s needs have, in such a good way, forced us all to expand our very limited social circles and our very limited notions of what life with disabilities entails.
A month or so ago when I spoke on the phone with a parent advocate about Lucia’s impending transition out of the state’s early intervention program and into school, she compassionately yet inaccurately projected another presumption onto me: “Oh I’m sure your heart is just breaking at the thought of her going to school all day, on that big bus. I’m sure it is so hard to see her go.”
Perhaps it would be hard to see Lucia get on that bus if she hadn’t already been living her life so fully. But knowing how much Lucia enjoys all of these people, adventures, and diversity in her life, my husband and I are decidedly eager and excited for her to start school. Perhaps another thing all these doctors visits, nurses, and therapists have prepared us for is trusting others with our kid, knowing it’s so important to share her rather than shelter her from the world.
When I look in awe upon Lucia’s full life, I cannot fathom the wisdom of God. This is precisely the life I would want for my child, and yet, who could have imagined this life in particular? Who could have imagined this village that God has provided, this little social butterfly despite her lack of words and gestures? Who could have imagined that it would take the world and its limitless possibilities to help us see how Lucia has expanded all of our lives? Who could imagine that a life with disabilities could be so rich and nuanced and bold and grand?
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.
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.
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.
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.
The world is not set up for children (or adults for that matter) with special needs so every day can be a challenge. What I’ve observed during my time in China working with families with kids with special needs and here in the US is that lack causes families to get really creative and innovative. Perhaps not surprisingly, families with children with special needs don’t allow themselves to be stymied by an ableist society, lack of equipment or access to it, or most especially, the differences of their children–rather, they often work within society’s limitations to find the best ways to meet their children’s needs.
So, I want to highlight that ingenuity, tapping into our common wisdom, rather than just bemoaning our critical challenges.
In this post, my goal is to start a chain of communication where families with children with special needs can share cool “life hacks” with one another and find solutions to their everyday challenges. I’ll start by sharing one of the things that we’ve discovered that works really well for Lucia, our daughter with a genetic syndrome of the brain, who feeds through a g-tube, and has a combination of high and low tone. Then, I’ll post a question in an area where I need help. What I’m hoping is that someone out there can answer my question, either on their blog, or on social media, and share their “life hack” and pose their own question, and so we can keep sharing! Feel free to use the hashtag #specialneedshackathon so we can connect up all the posts.
So here’s the format: 1) Answer a question (on your blog or social media) by sharing a life hack that’s worked for your family or or your child with special needs; 2) Pose a question you need help with; 3) Use the hashtag #specialneedshackathon!
Of course everyone’s children’s special needs will be different, but my hope is that we can begin this important conversation, focusing on our strengths and our creativity, and building our community, rather than perhaps having to reinvent the wheel! If you know of other efforts to share solutions like these, please point me that direction, as well.
So now for our life hack! We always share with other parents that we stumbled into a great solution in that very early on we could tell that a regular stroller wasn’t going to give Lucia the trunk, torso, and head support that she needed to sit well and enjoy the world. When she was about 14 months, we had her in an umbrella stroller and were visiting the Abilities Expo in Edison, New Jersey. Our friends had a Special Tomato chair for their son who has CP and we were eager to try one out! My husband asked if the size one soft-sitter would fit into the umbrella stroller and though the personnel didn’t know, they were eager for us to try. Well, lo and behold, you can strap the size one chair onto an umbrella stroller and it fits all snug, almost as if it was made to go in there!
Of course, you can probably fit the chair into many strollers, but for us, attaching it to an umbrella stroller has meant more easy mobility for our family and a lightweight, cheap solution, as the chair alone can be quite expensive. Special Tomato also sells their own strollers but this seemed like a good solution, given that she will be growing out of it in no time!
And now for my question: as Lucia grows out of a traditional changing table (she’s 2 and 1/2 and around 24 1bs and 31 in), I’m wondering what other parents of older kids with special needs who still use diapers do for a changing solution? We’re moving into a new house so we’re interested in finding something that is more long-term, comfortable for her, and doesn’t cause our backs to ache every time we go to change her! Any special needs life hacks out there???
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.
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:
What are you up to this week? Grab a cup of coffee and let me in on it!
Over the past five years or so, this blog has taken a massive shift in trajectory toward exploring the lives, needs, and gifts of people with disabilities, in China, in our local church, and through my own experience with my daughter. (In fact, I’m realizing how much I need a new tab for disability on here! Coming soon…)
What I’ve found as I’ve only just begun to embrace this collision of my anthropological, theological, and spiritual life is that our theologies, when it comes to understanding disability, are quite limited. They’re often not broad enough to consider the gifts of the Spirit people with disabilities possess, because they’re caught up in a rhetoric of healing, medicine, suffering, or overcoming. Or they’re plagued by an anthropology that makes disability some surface form of neoliberalist inclusion rather than a deep paradigm shift for us all in what diversity and its value really confers.
We human beings are searching for theologies of disability that ring true when it comes to the light, challenge, and wisdom people with disabilities bring to life–theologies that confront our hollow concepts of both diversity and God. But we need to learn and hone and witness to these theologies through practice rather than mere intellectualism, recognizing the transformative experience of life lived with other and with God.
“You never know. Maybe she will get up and walk. Maybe she will be able to eat and talk like other kids…maybe someday she will be normal.”
I have often heard these well-meaning words from friends, colleagues, and church folk about my daughter, Lucia, who was born with a progressive genetic disease of the brain. From the time she was just a couple months old, from her seizures, to her feeding tubes, and onto her diagnosis, our family has been confronted with the idea that Lucia is abnormal. But perhaps especially because she’s our first child and we know no differently, or perhaps because my husband and I have learned so much from her, I bristle at statements that suggest life would be better for us or Lucia if she would conform a bit more to the standards we hold for other kids. As a person of faith, I often wonder what God would have to say about our ideas of normal and how God might use children and youth like Lucia to fight against a culture that (perhaps un-self-consciously) worships ability and regards disability as a problem.