Monthly Archives: June 2018

The inequalities that bind

La frontera
US-Mexico border, Agua Prieta, Mexico/Douglas, Arizona, 2003.  My photo.

This week we’ve seen children confined to cages, heard their screams as they’re ripped from their parents and witnessed our president bend to public and political pressure to amend his callous “zero tolerance policy” at the border. Yet, thousands of migrant children remain separated from their families, and I keep wondering if we’ve learned anything from all this. The government has wanted us to see a chasm between those families at the border and our own. In place of what could be a common humanity, a desperate dare-we-say American-like doggedness to seek a better life for their persecuted families, Trump and his allies have offered fraud, smuggling, and criminal behavior as self-inflicted explanations for migrant families’ plight. So perhaps what we’ve been faced with this week is the hearty evidence that not all families, let alone all childhoods, are created equal in America…

But isn’t this something we already knew?

We know that being needy makes you vulnerable in America, but whereas teenagers marching for “black lives matter” are vilified for lives lost, the white teenage activists from Marjorie Stoneman Douglas High are praised for their activism.  It seems what we’re encountering is something even more pernicious than the inequalities themselves, rather the realization that not even all need is created equal.  Since the election, I have been desperately sharing my own story to keep the lives of families with children with disabilities, alongside the lives of so many other marginalized families, in view; however, it only recently occurred to me that by telling our story, I may be rendering further invisible families like the ones being turned away at our borders.

You see, while my family’s need for life-sustaining Medicaid for our medically fragile child elicits incredible sympathy, that’s largely because my daughter’s disability is often viewed as an underserved tragedy that has befallen a white, educated, hard-working, affluent, heterosexual couple. But while so many other families on Medicaid (especially families of color), equally needy to mine, are belittled for their poverty, chastised or blamed for the presumed neglect, fraud, or abuse that put them into the system in the first place, a common response to my family’s vulnerability is not just pity, but often, congratulation. We are heralded for our love and our sacrifice for our daughter. Meanwhile, the very nurses employed through Medicaid who tend to our daughter, monitoring her heart rate, seizures, and breathing overnight, are immigrants like those being turned away at the border. They work in unsteady employment for low wages, rarely receive healthcare, and they have either already left their children behind in their countries of origin in order to provide for them, or they leave their children in the care of others, so that my family can sleep at night.

These migrant families are part of what scholars have called the global chains of kinship and reproduction, stratified care work that elevates some families on the backs of others. If you think about it, certain groups of immigrants, children who are “rescued” through inter-country adoption or born through international surrogacy, are uplifted, generously welcomed into our borders and our citizenship, while the families they came from, foster mothers, surrogates, nannies, and other care workers, languish in the shadows, families already torn apart yet silently, incrementally, with little fanfare. Thus, the separation of families at the border is but a visible demonstration of the invisible borders we often perilously draw around our own family lives.

The myth of the modern family and this tireless invocation of the need for “family values” suggests that each family stands alone. Yet, in articulating my family’s story of need I’ve become aware of the ways we are uncomfortably and unevenly indebted to one another. I’d like to believe that with the outcry on social media and the political pressure brought by the public upon the administration’s immigration policies, a new kind of family values is emerging that does not deny, yet makes visible these inequalities and the families who have endured them in the pursuit of wellbeing and freedom.

But the challenge comes in both maintaining our common humanity and acknowledging the injustices that bind and separate us from one another. We cannot afford to look away, for it will cost us all our humanity. But we also cannot afford to go on living our fictional, solitary lives while asylum is being criminalized, need is being stigmatized, racialized, and vilified, and children with families are being abused and institutionalized.  My family, likely your family, needs these persecuted families, whether we choose to admit it or not.  If we cannot break the global chains of inequality, perhaps we can at least qualify and dignify the emotional labor that families like mine benefit from everyday.  We can refuse to participate in the politics that slander the need of some to elevate and fulfill the needs of others. We can turn away from pity and charity and toward justice, mercy, and grace.

And we can demand that America must do better by all of its families, especially those who have so painfully paid the price of vulnerability, so that others can thrive.

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.)