The diagnosis that my daughter Mattea had been born with severe brain injuries arrived in tandem with a dire prognosis for the future of my family. Doctors volunteered the “fact” that 95% of families to which highly involved children were born failed under the strain of caring for them. Other interested parties fleshed out this statistic, saying that in nearly all cases where such families did collapse the child’s father was the one who usually jumped ship. In those families where the father stayed in the marriage chances remained high he would abandon the child emotionally, acting the roles of provider and primary insured party but leaving the lion’s share of the work of fighting for the child’s life to the mother.
This was the first of the rhetorical obstacles my husband and I encountered as we tried to steer a fair course for Mattea. The language thrown at our circumstances was overwhelmingly against our making our best efforts at retrieving her, whether it dressed itself up in inspirational rhetoric or as a scientific storying of our circumstances. Or, if we did accomplish some success, the credit for that success was siphoned off in other directions. I call these kinds of discourses “stealing God” narratives–narratives that appropriate religious or other powerful language in order to curb social consciousness and reduce personal or social responsibility during mortal crises. Also, stealing God narratives may appropriate sacred language to mine the power of such crises for personal profit, be it for “spiritual profit,” financial profit, or for some other form of exploitation or control.
Stealing God narratives divide into three categories: failure folklore, firewall folklore, and stealing God narratives proper wherein someone exploits another’s circumstances for personal benefit, self-stimulating “inspirational” stories being among them.
Folklorists define failure folklore as folklore that reinforces cultural, religious, or philosophical boundaries for what is possible or for what ought to be done in particular circumstances. Such narratives recount tales of disaster or predict misfortune for anyone transgressing such boundaries or for anyone failing to meet the criteria for maintaining them. Doctors’ helpful statistics regarding the nearly inevitable destruction of our family fall into this category.
This is not to say that families don’t falter beneath the weight the responsibilities of caring for a child with challenges adds to the high load of raising a family. Certainly, ours did–it still does. And we know some families who have more or less followed the pattern doctors and others warned us about early on. What fascinates me is that of all the narrative paths marked out at the beginning of our task, by far, failure narrative dominated the discussion–what wasn’t possible or what Mattea or we would never be able to do. To try would likely lead at the very least to disappointment and at the worst to disaster. Very little of our health care specialists’ language engaged what was possible for our daughter or for us, her caretakers.
Within a year our circumstances moved us to the margins of our LDS community. The reasons this happened have more to do with living in a state of constant emergency than with anything else. However, at these margins we found ourselves swimming against currents of firewall folklore and “stealing God” discourse, names I coined to describe the linguistic phenomena we encountered.
Well-meaning people, overcome with the pathos of our situation, shared with us stories that we came to understand acted as a firewall for their thinking about our problem. Being told “She was one of the few who opposed Satan face-to-face during the War in Heaven and this is his revenge upon her” or “She must be so perfect already that she doesn’t need to be tested like the rest of us” did not fill our beggar’s cup for the here and now, as it seemed to be intended to do. Eventually we came to realize such language wasn’t meant to help us but rather to protect the storyteller. Language of this sort puts up the message, “We can do nothing here; it’s out of our hands.” These stories may affirm faith but have as a deeper purpose dousing or containing fires that the endless ironies and conflicts of mortal crises kindle like sparks from a downed power line. In effect, it resigns responsibility, relegates the disabled to one degree or another of the “not accountable” category (denying them the chance of developing any potential for free agency that remains to them), and propagates the language of abandonment.
Stealing God proper discourse may be demonstrated with a story. When Mattea was about three years old I tried to wean her completely to solid foods. She lost her swallow reflex and developed a tongue thrust that pushed most of the food I gave her back out of her mouth. She lost weight rapidly. We were faced with the prospect of surgically implanting a feeding tube (inevitable, according to doctors) to prevent her from starving to death.
One day as I tried to feed her she swallowed an even tinier fraction of food than usual. At the end of my rope, I spread my arms wide, looked up at the ceiling–toward heaven–and said, “There must be a simple solution to this problem! Tell me what it is!”
In that moment I flashed on a memory. As a child I had been responsible for medicating the family dogs. I had opened their mouths, placed the pill as far back on their tongues as I could, held their muzzles shut and massaged their throats, which produced an involuntary swallowing reflex. Down went the pills. I wondered: If the trick worked on dogs would it work for my daughter?
I put some food in Mattea’s mouth and promptly tilted her bottom jaw up and held it there with one hand so she couldn’t open it. With my other hand I massaged her throat. She swallowed! Everything went down. At every meal for the next couple of days I performed this simple procedure with the result that her swallowing reflex re-engaged and within a few days she was swallowing on her own, taking in huge amounts of food and gaining weight.
Shortly after this I was speaking on the phone to a relative–I’ll call her Relative X. The conversation went like this:
Me: We solved Mattea’s eating problem! She’s taking in enough food. We don’t have to put in the stomach tube!
Relative X: (A pause) Well “¦ that must be because [Relative Y] has been attending the temple every morning in [Place Z]!”
My husband and I have seen our best efforts and inspiration in Mattea’s behalf co-opted repeatedly in this fashion. The general pattern boils down to this: when we experience success some people assume we have succeeded not because of blessings related to our efforts and Mattea’s own heroic strivings but because of their righteous prayers in our behalf. Sometimes people assume that any success we experience that occurs in proximity to any of their (presumed) righteous actions must have occurred as a direct result of their actions, post hoc ergo propter hoc. But when we experience setbacks these same people insinuate the misfortune occurred because we lacked somehow in worthiness.
Over the years I’ve come to realize that mortal crises are in truth powerful situations. They generate energy that flashes like lightning bolts between divine and mortal states. Miracles, inspiration, and spiritual and psychological awakenings bloom in these charged pathways, and the conditions they illuminate and the changes they cause draw eyes, some of which are hungry. In many cases people’s prayers for Mattea’s and our well-being contribute to our own exertions and help draw upon this power. As we rejoice at our successes, such people congratulate us and rejoice with us, expressing their love for us, their respect for our circumstances, and their gratitude to God for helping us. But in many other cases the language we meet in the wake of such energy surges (or depletions) exploits circumstances to support ideas of self-worthiness or to satisfy some other personal spiritual hunger or greed. As such it may be considered predatory.
I’ve written about exploitative and predatory language before in my series of posts “The Working Language of Good and Evil.” Also, I’ve raised issues about narrative’s effects upon the circumstances of and prospects for the disabled. (Here is a good post on that subject from another author.) In fact, stealing God discourse swirls about in any situation where exploitation occurs, in human interaction with the environment and with non-human species, for example, or in mega-international government-backed institutions that employ stealing God rhetoric for control and financial gain. I’ve used the example of my family’s struggle because that’s one place I’ve found such rhetoric to be especially burdensome. Furthermore, some stealing God rhetoric doesn’t invoke God, as in the language our doctors perpetrated. It mines whatever transactional power its target perceives as being essential to success or to the warding off of misfortune.
LDS have little difficulty recognizing stealing God rhetoric where it occurs outside their culture, especially when it attempts to justify spectacular atrocities like mass murder. Many, but not all, LDS will pick up on the violatory nature of such language when it tries to justify destructive or predatory behavior at the fringes of or within LDS communities. Less often are LDS conscious of the more subtle and highly nuanced shades of stealing God rhetoric that occur in daily conversation.
The language of belief can do better than have the appearance of meaning or doing good; that is, it must do better than merely seem to speak with the tongues of angels. The language of belief is kind, kindness being, I have discovered over the years, one of the highest forms of intelligence. Such language is fruitful language, sustaining not only itself but through propagation it offers itself to meet the needs of others. It does not advance itself by exploiting others’ fortunes or misfortunes. It labors to close the gap between people and between a people and that to which it aspires, like the company of God. Language of belief does not assert itself against its neighbor or against the universe. As it probes the teeming distances between what is and what is possible, it is joyously exploratory. It asks “What is it?” and listens in wonder to the multi-facetted response. It questions itself as thoroughly as it questions Other, and when it finds itself lacking, it takes upon itself the responsibility to find the next best thing, the revelatory metaphor, the liberating paradox, the ever-expanding symbol, thereby crossing boundaries established by less productive, less creative, less pro-active, and less kind words.
(If you would like to read “Medicine Child,” a poem I wrote about Mattea, go here.)