“Still to Behold, Still to Be Told:” Heather McHugh’s CAREGIFTED and the Narrative of Caregiving and Disability by Jeneva Stone

I’M A LONG-TERM CAREGIVER, an identity arrived at with resistance, an identity of displacement that pushes away the small of my former self. My son Robert has multiple severe disabilities, the result of a rare genetic disorder, and a braid of equal parts love, duty, and a mutual receptiveness to adventure links us. Love comes naturally, duty chafes, and adventure is what we invent to pass the time. “Pretend you’re a dragon,” I said before Robert’s most recent surgery. The best kind to be is the benevolence-breathing dragon, whose smoky light blue breath makes right again whatever it touches. So Robert went off for his procedure thinking about flying over the world and fixing car accidents and blown down houses and how everyone would cheer when they saw him coming. That time, he failed extubation, and a ventilator supplied his breath for a week.

Imagination makes me large. The constraints of duty make me small. During the first year of Robert’s disabilities, I watched a biopic about Oscar Wilde. Consigned to forced labor for his “perversion,” Wilde’s only joy is writing. He learns to set his pen down docilely when time is called and his materials whisked away. The film terrified me because I understood my future. For years I lived watching the clock as time drew near, or abandoned what I was doing for days due to circumstances — all with an understanding that this wasn’t temporary. It is forever. I once told my daughter that part of running is learning how to manage your breath. Part of caregiving is learning how to manage constraint, how to pace yourself within its boundaries.

I first met Heather McHugh when I was enrolled at the Warren Wilson MFA program and she was a teacher there. We did not work together, and I don’t remember the content of our brief conversations. Heather, though, struck me as a person I wanted to be again: smart, funny, and imbued with an instinctive empathy that emanated from her like an electromagnetic glow. Warren Wilson is a low-residency program, and those 11-day de facto retreats were my first period of respite from my life with Robert, my first extended separation from him, my first chance to return to the person I’d been in-progress of becoming before his disabilities manifested. Every day I spent there felt like a small miracle of opportunity, and I’m sure some of my fellow students found me pathologically cheerful. Many of them knew what I dealt with at home because I spoke of it often: I wasn’t able to separate my life with my child from my life as an artist. At the time, I thought I was supposed to — that becoming a poet meant leaping the bounds of raw experience into the perfect world of artistic existence about which W.C. Williams wrote passionately.

Little did I know that a half-dozen years later, my world would begin to intersect with Heather’s once again when she launched CAREGIFTED, and I could reinforce the necessity of respite for caregivers. While unable to accept Heather’s invitation to participate in board events due to the complexity of my son’s care, I encourage long-time caregivers to apply and, through social media, help to spread the word about the organization and its mission. I think of myself as a voice in a chorus of support.

Two events, from art and life, shaped McHugh’s decision to launch CAREGIFTED: a 2009 MacArthur grant and the 2011 birth of a severely disabled child to her godson and his wife. In several interviews, McHugh expresses shock at the retrenchment her godson’s family experienced: the medical and insurance bills, the changes in living arrangements, and the downshifting of career and ambition. After the MacArthur award, McHugh says, she fell silent as an artist for a while, until she realized another creative voice through her respite project.

In a television interview with Eric Liu, for “Seattle Voices,” McHugh discusses these creative impulses, including “love” in all its forms. She notes frankly that sexual love is creativity itself, and that self-sacrifice, whether in the service of art, gifting, or caretaking, becomes a type of pleasure. While McHugh does not mention it specifically, this line of thinking finds resonance in her efforts to support caregivers who themselves have created children — challenging children — that present challenges in much the same way that art itself presents challenges in its making and interpretation. At the interview’s conclusion, McHugh says, “Some people think I’m abandoning art — I’m not — it’s another art.” Caritas, McHugh emphasizes, has become to her the most interesting form of love.

CAREGIFTED is not an artist’s retreat (the caregivers it serves come from all walks of life), but rather an on-going collaboration among caregivers and artists that attempts to integrate and enrich both life and art. The nonprofit organization’s mission statement reads, in part, as follows:

CAREGIFTED gives respite to long-term family caregivers, raising awareness of their historically unprecedented numbers. Full-time caregivers of the most severely disabled have sacrificed their own leisure, resources, and ambitions to serve those unable to serve themselves. Such acts of love go largely unnoticed because these caregivers are generally confined to their homes, mired in unpaid labors. CAREGIFTED offers weeks away in inspiring locations — where caregivers refresh their perspectives and record their views in words and images, returning home better rested and represented. CAREGIFTED distributes their stories, bringing together artists, philanthropists, and caregivers in a common understanding: THE GIVER IS GIFTED.

In other words, CAREGIFTED seeks a dual impact, both sociopolitical and artistic: a recognition of the toll caregiving takes, and a nuanced understanding of caregiving as story and alternative perspective. In McHugh’s words, they are “stories of each fate’s undreamt of courses and each love’s undreamt of recourses.”

The nonprofit offers all-expense-paid, one-week getaways, in quarters maintained by the organization in British Columbia, Maine, and Napa Valley. Caregivers may do whatever they like — sleep, tour, read, write — and interact with their “concierge” (often McHugh herself) as little or as much as preferred. McHugh has, elsewhere, described the incredible transformations that take place during these retreats as caregivers have the experience of finding a way back to the self. Ramona, a respite recipient,has said, “I don’t want to be defined through my child. I want to be me and I want him to be him. But that’s hard. If you’re a caregiver, you are defined through your kid because this is your job. It was not my decision to become a caregiver.”

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Neither was it mine. And, reading Ramona’s words, I felt that same ambivalence she expresses: a residual sense of self, an ever-present tug of integration with an identity not my own. A sense that as a poet and writer, my life and art should not be mere reflections of one another, yet a growing understanding that my life circumstances are insistently shaping my relationship to the world, my vocation, and my perspective. The unknowns of Robert’s condition, from a 14-year search for a diagnosis (which clouded interpretation of his movement, gesture, and formulation of intent), to a lack of prognosis (or the narrative of endings), made his situation seem at times analogous to art and literary theory.

I often illustrate this through the critic Stanley Fish’s concept, “kinetic art.” In “Literature in the Reader: Affective Stylistics,” Fish explains that words follow one another along the line of a sentence, and how a reader parses it creates a text unique to her impressions, unique to the circumstances of each reading:

Kinetic art does not lend itself to a static interpretation because it refuses to stay still and doesn’t let you stay still either. In its operation, it makes inescapable the actualizing role of the observer. Literature is a kinetic art, but the physical form it assumes prevents us from seeing its essential nature, even though we so experience it.

Fish’s thesis makes an analogue with the lives of the disabled and their caregivers — disability’s physical forms and expressions mimic stasis, permanence, in the minds of many outside observers; however, the essential nature of any life is change. Readers write their own narratives, which creates real-life conflict for caregivers as they struggle with imposed stories of sentimentality, false hope, heroism, helplessness, and even blame.

For many years, I kept a blog that focused on the intersections of disability, stories, perception, and politics. As a result, the notion of “accessibility” has taken on new contours for me, and my politics and my art have begun to overlap. Key words from each sprout complexities. What does it mean for a building to be accessible? A social nicety, a response to the law, a willing shift in aesthetic choices? What does it mean for a poem or a painting to be “accessible”? A nod to the masses, a set of footnotes, a coordination or splintering of perspective that engages multiple readers or viewers? Is inclusion a political movement that seeks to ensure disabled citizens’ education and participation in the community, or is “inclusion” the antithesis of revision, an exclusionary process through which a “perfected” work emerges? I was beginning to question perspective and cultural narrative.

As I write about Robert in essays, poems, and recently, a memoir, I keep those questions in mind. I work with digression and excess. Once I was told — before becoming aware that caregiving had shaped my aesthetics — that a poem of mine was “a beautiful mess,” a comment just as easily applied to my child. Actually, the poem, like some of my nonfiction, uses excess and digression to create a network of keywords that prioritize ambiguity, asking the reader to contemplate the paradox of narrative control and reader reception in the service of disrupting preconceived notions.

As I draft the memoir, new concerns about voice and authenticity emerge. Will it be read as “a mother’s story,” with all of the attendant sentimentality? The phrase is a frequent subtitle in memoir, and seems to define the story from outside, from the narratives society imposes upon caregiving.

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CAREGIFTED’s efforts to portray an authentic narrative of caregiving and give voice to caregivers finds context within an emerging genre of literature on the subject — including writers such as Emily Rapp, Brenda Shaughnessy, Andrew Solomon, Ian Brown, and Vicki Forman. In her memoir of a child with Tay-Sachs, The Still Point of the Turning World, Rapp asks, “How did we understand the meaning and purpose of Ronan’s life in a society — like most societies — that was dedicated to progress and achievement, where going back was synonymous with failure?” The solution, she identifies is “people using language to make their experiences known. Enter art in its purest form: mucking up meaning. Disrupting our worldview.” Few stories are as profoundly disruptive as the shift in expectations between delivering a child who will develop typically and delivering one who will not. Of course, “expectation” is an aspect of imagining, but “expecting” is also the act of carrying a fetus to term, further blurring the line that separates art from life.

In Far from the Tree: Parents, Children, and the Search for Identity, Andrew Solomon describes a cultural resistance to disability that runs so deep it casts doubt upon lived narrative:

Although most families do find meaning in their predicament, fewer than one in ten professionals who deal with them believes it. “I was determined not to be around folks who saw us as tragic,” one exasperated mother wrote. “Unfortunately, that included my family, most professionals, and just about everyone else I knew.”

Unlike a mother’s “story,” which invites skepticism in our society, immediately limiting the scope and translatability of the experience, Ian Brown’s memoir, framed as “a father’s journey,” suggests universal authority and heroic action. In The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son, Brown characterizes the disability narrative he dislikes:

We weren’t disability masochists. I met those people too, the parents of disabled children who seemed to relish their hardship and the opportunity to make everyone else feel guilty and privileged. I disliked them, hated their sense of angry entitlement, their relentless self-pity masquerading as bravery and compassion.

Brown’s use of the word “masquerading” points to an inauthentic self-presentation as the root of his dislike. Yet surely anger and self-pity, bravery and compassion are valid representations of what it may feel like to be a caregiver. Brown goes on, “They [the self-pitying caregivers] wanted the world to conform to their circumstances, whereas […] I simply wanted the rest of the world to admit […] [our lives] weren’t any different from anyone else’s, except in degree of concentration. I realize I was delusional.”

Brenda Shaughnessy parallels Brown’s disorientation in her third collectionOur Andromeda. What the caregiver has come to understand as lived authenticity flickers within its presentation to others as a form of storytelling. Her long, eponymous final poem explores two worlds: daily life and an alternate universe identified as Andromeda. Initially, Andromeda seems a product of sentimentality, of the author’s wishful what-might-have-beens: “When we get to Andromeda, Cal, / you’ll have the babyhood you deserved.” Yet, through a skillful use of pronouns, Shaughnessy complicates a depiction of maternal sentimentality. While the poem is a direct address to her son Cal, she situates herself simultaneously in the worlds of her former and current self:

I’m the one who joined that cult
of expectant mothers
who felt ourselves too delicate

and optimistic to entertain the notion,
as if I were inviting it to an unpleasant
afternoon tea, of something going wrong

with the birth of my child. Like so many
others, I thought it wouldn’t happen
to me. In a way, it didn’t happen to me.

It happened to you.

The “you” to whom “it happened” is both Cal and the reader: the “me” is a former self who might just as easily be you. In so doing, Shaughnessy challenges comfortable narratives of disability that confine it to another universe where the “tragedy” happens to someone else. These complexities of authenticity and personal narrative culminate in the final section with the exhortation, “My glorious son! A mother’s boast / is never merely delusion.” Shaughnessy explores her situation from multiple perspectives — what makes one narrative more honest than another?

Rapp explores these same anxieties about what constitutes a valid caregiving or disability narrative: “Whenever someone experiences an event we might deem ‘unlucky’ […] they often immediately flip into ‘you’re so brave,’ which is a distancing maneuver disguised as a compliment.” And the discomfort of outsiders is evident in Tom Bissell’s introduction to Vicki Forman’s This Lovely Life: A Memoir of Premature Motherhood: “[S]he sometimes expresses anger at certain doctors, and she occasionally behaves in ways that some readers may find appalling. But just as this is not a depressing book, it is also not an angry book. It is a book filled with love and wonder.” Bissell discusses authenticity, “When the worst (one assumes) has passed, the reader awaits the various authorial balms, tonal coolants, and narrative stand-downs demanded by such a trauma-splashed opening.” His expectations of authenticity (“balms” and “coolants”) shift in response to what he goes on to call “reality’s unforgiving atmosphere,” the lodestone of Forman’s book.

In these works, credibility often depends on a reader’s willingness to accept what may seem an unfamiliar perspective. Caregivers, like these authors, are everywhere, trying to escape narrow discursive channels with steep banks. CAREGIFTED will help them be heard, not just the writers among us, but every day people with a diversity of challenging narratives.

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In addition to giving voice to candid experiences of disability through plans to distribute transcripts of caregivers’ insights, CAREGIFTED has established an ambitious arts mission. Its fundraising strategy seeks to integrate artists. Events have included a January 2013 sale of manuscript critiques by prominent authors, as well as benefit readings. Board member Robin Black, author of the collection If I loved you, I would tell you this and the forthcoming novel Life Drawing, describes her goals:

From the start of my involvement with CAREGIFTED, I wanted some percentage of our fundraising efforts to relate to the arts because I like the idea of financial gifts being inextricably intertwined with creative gifts. And artists, among others, are professional caretakers of our empathic capacities. I think the highest mission of fiction, for example, is to encourage people to understand and to believe in the reality of the plights of other people. So, intuitively, it seemed right to me that our fundraising efforts would themselves produce art, would use creativity to raise awareness. What appeals to me and I think also to Heather, is that the sale of critiques didn’t only produce money; it also gave artists who wanted guidance and feedback on their work a chance to receive those things from their idols. Maybe this is a romantic notion, but I like to think that the fact that so many writers became aware of what we’re about will find its way into their work, in some compassionate form. And if it is a romantic notion, I’m okay with that. As the mother of a disabled child myself, I need all the romantic notions I can find.

Black underlines how art and respite mirror one another, the way stories release us toward who we are or may become. McHugh’s respite mission is much more than a nod to the struggles of a sad minority we might forget as a PayPal donation receipt settling further into an inbox — it explores the crucible where life and art meet.

To that end, CAREGIFTED will also produce and distribute Undersung, a full-length documentary by Adam Larsen (whose latest documentaryNeurotypical is currently broadcasting on PBS). McHugh has describedUndersung as “important life stories still to behold, still to be told.” The film will bring to life the stories and reflections of several CAREGIFTED recipients, integrating material from before, after, and during their respite period. Available clips show a process that pieces together the narratives of these (mostly) women through interview and photograph, literally allowing the undersung to be “overheard.” Larsen effectively uses light and shadow to give the viewer a sense of these high-contrast lives: shots of disabled children within the sheltering shadows of a family home, the world outside bright through windows and open doors; a mother and her son silhouettes backlit along a pedestrian bridge against a charged gray-blue sky; caregivers on respite near the ocean, sunlight glimmering like jewels across fractals of the sea.

Larsen also manages to convey the habituated normalcy that becomes a part of caregiving, a love that finds expression through the shared mundane of human experience: a child expressing joy, taking a walk, a mother braiding her daughter’s hair, the daughter spelling “bus.” Nothing is played for shock value. Rather, the strain of caregiving expresses itself through the viewer’s acclimation to the flicker between typical and nontypical. The daughter who spells “bus” is nearly an adult; the adolescent son out for a walk rejects his mother’s restraining hand, roughly. Difference becomes as nuanced as perspective, not an occasion for an ogling stare.

Larsen’s Undersung captures the tension between kinesis and stasis, by animating images and words, in the way only film can. On the one hand, the fluid nature of film embodies kinesis, as viewers watch and re-watch, the memory retaining different versions of the image sequences and their impressions. On the other, the documentary relies on the caregivers’ words to shape the drama, and many of those words convey the stasis and isolation commonly associated with such lives. “It’s like starting over every day with a young child that’s never going to grow up,” says one, her eyes wide as an apparent despair wells from within. This statement brims with authenticity, presenting a narrative in accord with received truisms about the fear and despair associated with profound disability.

Yet another caregiver complicates and challenges our understanding of the source of this despair:

I think society in general rushes in to support people that have acute issues […]. Friends, family, even strangers will provide money, food, support to help them for that period of time, which is usually short. But people with chronic issues and conditions that never seem to get better as society wants them to get better — but they’re kind of in a maintenance mode — people don’t really want to provide the support because there’s no quick fix, there’s no feeling of accomplishment: we’ve helped them and, look!, they’ve moved on.

These two utterances illuminate the tension underlying authenticity: to what degree an author can seem genuine depends in part on what a reader is willing to accept or believe. The second caregiver’s words illustrate this conflict. Society inscribes narratives upon caregiving, one in which people recover and move on, or one in which people don’t recover and, therefore, do not merit assistance. That caregiving might be a “maintenance mode” does not fit into our received stories, yet it’s a valid narrative.

When complete, the story that Undersung tells will offer an unvarnished look at caregiving and disability. The beauty of the finished film will be in capturing a range of perspectives — disability affects families without regard to race, ethnicity, or religion, and, like everybody else, caregivers’ opinions and stories are diverse and sometimes contradictory. Writing, like caregiving, regardless of genre, often involves a degree of isolation and narrative insecurity. There is strength in numbers, and Undersung may provide a narrative that is “accessible” in a new way: perhaps as a coordination or splintering of perspective that engages us all. Or, as McHugh puts it, the film — and the organization itself — “will wind up casting light on the common human fate, on the story of us all.”

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To learn more about CAREGIFTED and how you can participate, visit theirwebsite. 

Jeneva Stone is currently at work on a memoir about her family’s 14-year search for a diagnosis for her disabled son.