Abstract

This article utilizes data from ethnographic research on deafblindness advocacy in Guatemala to show how families in this community create new forms of kinship with one another based on their children's shared diagnosis. The category of deafblindness expanded significantly in recent decades and now describes a diverse disability population. This case study shows that the umbrella diagnosis of deafblindness opens new possibilities for community formation and belonging, granting diagnostic intelligibility to children who would have received an ambiguous label of having "multiple disabilities" in the recent past. By proposing the concept of diagnostic kinship, this essay demonstrates that diagnoses can offer not only affective and logistical support, but can also generate new kinship possibilities and forms that are contingent on biomedical categories.

Introducing Diagnostic Kinship

"We are all family." I heard the refrain constantly during my research on deafblindness advocacy in Guatemala. The concept of deafblindness changed significantly in recent decades, widening its scope to incorporate a population of unprecedented diversity. My project centered on families – primarily mothers – as well as on disability professionals in Guatemala's nascent deafblind movement. In this essay, I revisit their stories to probe everyday experiences with deafblindness as an amorphous unifier, grouping together individuals whose bodily forms appear to have nothing in common aside from this label. Through this case study, I examine how a deafblindness diagnosis converges with everyday affective and logistical needs to generate new formulations of family within this community.

This essay extends Rapp and Ginsburg's work on "kinship imaginaries" (2011), which reframes what kinship is, means, and does for families of children with disabilities. It also builds on scholarship on disability family activism (Silverman 2012), as well as on care and parenting (Bérubé 1996, Jack 2014, Kittay 1999, Landsman 2009, Simplican 2015), highlighting the complex intersections of diagnosis, kinship, and political and social change. Through an ethnographic analysis of the death of a deafblind child, whom I will call Baby F, this essay introduces the concept of diagnostic kinship to refer to the distinctive disability communities that families form around their children's shared diagnoses.

Diagnostic kinship is particularly significant in the context of rare (or low-incidence) disability categories, such as deafblindness. For such populations, the geographically dispersed nature of individuals and their families poses a major obstacle to forming networks. The inability to obtain membership in a public community of support hinges on an individual's diagnosis; without a diagnosis for their child, parents I spoke with frequently reported feelings of isolation from any broader disability community. In these cases, the root of their children's disabilities were too obscure or unknown, thus pushing offspring and parents alike from more common diagnoses and recognizable advocacy and support movements (e.g., within the autism community) and cutting them off from recognized categories of empathy and understanding. These children and families were marginalized by virtue of demographics – their numbers being too small, too scattered.

This essay positions diagnostic kinship as a critical alternative to the continued erasure of people with disabilities – and, by extension, their families – who are deemed currently to fall outside of clear diagnostic categories and their corresponding disability populations. I use erasure to refer to disability's vanishing act outside of the parameters of accepted labels – beyond Down syndrome, for instance, or blindness. In turn, it includes both the theoretical and deeply embodied elements of rare, undiagnosed, or otherwise ambiguous disability worlds. By examining the umbrella category of deafblindness – itself a misleadingly clear marker obscuring the diversity of bodies and experiences unfolding under that label – this piece highlights the messy and partial reality of diagnostic categories and the communities they engender. If Disability Studies is to be inclusive, it must account for the diversity of diagnostic forms, including those that defy clear categorization. This framing pushes back against the nagging presence of a medical model, which frames undiagnosed and rare syndromes as individualized anomalies. Ethnographic studies of these disability worlds, however, reveal that they cannot be reduced to singular cases or isolated experiences.

This essay also extends anthropologist João Biehl's ethnography of social abandonment, Vita (2005), which analyzed the life history and writings of a diagnostically ambiguous woman inside of a Brazilian institution. Catarina, the subject of Biehl's ethnography, was found ultimately to have a rare hereditary condition, and her diagnosis is the culmination of a fascinating text that pushes readers to ask whether her illness is in fact real. In contrast to a search for answers and certainty, this essay asks a related question: what might it mean – ethnographically and practically – to consider those cases in which diagnosis remains ambiguous or partial? How might meaningful communities emerge around disability experiences that are assumed to be highly individualized and isolating?

Diagnostic kinship is also a useful window into the intimacy of bodily and affective experience surrounding disability in the family. Merging affective experiences and political action, it challenges the assumed placelessness of atypical or otherwise unexpected disability forms, carving out new possibilities for cohesive communities around diagnostic precarity itself. The corporeality of disability and care in daily life offers an important reminder of the acts, behaviors, and adaptations that become embedded in families' experiences. Here, the strange becomes familiar at the level of the body. Feeding tubes, bottles of medications, makeshift communication systems, the flat notes of almost-moans for the not quite verbal, hand flapping, slanted postures; the act of bathing or feeding a child long past those first few years of life; the communicative openings of touch, rather than words. These are the bits and pieces of a disability aesthetic that are obscured when the body falls out of view. While perhaps not easily wrangled into a particular explanation, these fragments must be reckoned with nonetheless. For the purposes of the broader project at hand, perhaps the provocation of diagnostic ambiguity – of its sounds, textures, and bodily collisions – is its insistence on resting in the spaces of messy articulation.

Widening Parameters: The Shift to the Deafblind Spectrum

The concept of deafblindness changed dramatically in final decades of the twentieth century. The popular image of profound (or total) deafblindness, such as Helen Keller, is no longer the rule. Although the term sounds deceptively straightforward, deafblindness now denotes individuals on a spectrum of both visual and auditory impairments, who often have additional disabilities. It hinges on the presence of dual sensory impairments, yet many people on the spectrum have additional intellectual and/or physical disabilities. Simply put, deafblindness is not what one might assume, describing instead a wide range of bodies, minds, and lived experiences.

The shifts in the causes, definitions, and manifestations of deafblindness have changed significantly over the course of the last century, connecting closely to innovations in public health. Rubella was the primary cause of deafblindness in the United States and Western Europe through the 1970s, prior to the development and widespread use of vaccines. If a woman became infected during pregnancy, her child could be born with Congenital Rubella Syndrome (CRS), leading to vision and/or hearing loss, as well as medical complications. Deafblindness began to change dramatically with the development of an effective rubella vaccine in the late-1960s and the subsequent introduction and distribution of the vaccine for measles, mumps, and rubella (MMR) beginning in 1971.

At the end of the last century, disability experts observed a curious shift in the deafblind population: as rubella faded from the scene, children diagnosed with deafblindness increasingly displayed multiple disabilities and/or health conditions in addition to their visual and auditory impairments. The population showed an unprecedented degree of diagnostic diversity and complexity. This stemmed in part from medical innovations in the 1980s and 1990s, which enabled premature and/or medically complex babies and those who contracted severe infections early in life to survive; these children embodied previously unattainable medical outcomes. Heightened awareness and knowledge of sensory impairments were also critical to the expansion of the deafblind population, since medical and educational experts were more attuned to forms of sensorial difference than in previous periods.

While the elimination of rubella reduced the deafblind population, as traditionally construed, it simultaneously opened a window for new types of bodies to be considered under this diagnostic framework. As in the past, these emerging faces of deafblindness had both auditory and visual impairments. Unlike before, however, the increasing presence of multiple disabilities, behavioral issues, or additional medical conditions lent a new complexity to the widening category of deafblindness. In Guatemala, as elsewhere, children with the diagnosis today often display a range of impairments and residual hearing and vision. Many would have been categorized in the past as "multiple handicapped."

The shift in diagnostic framing raises key theoretical questions about the interplay of biomedical categories, social recognition, and cultural and political context, as well as the impact on families. To disentangle the intersections of diagnostic ambiguity and kinship in daily life, this essay offers an ethnographic snapshot of the death of a young student at a special education facility where I volunteered. The events described took place at one of the three branches, or schools, operated by the Guatemalan Deafblindness Initiative (GDI), a grassroots disability rights and education organization whose members referred to themselves often as "una familia," or one family. 1 By offering a glimpse into these collective responses to the death of a young child from this program, Baby F, I show how this community of parents actively reimagined kinship in the everyday as an affective network of support built around their children's shared positions on the deafblind spectrum. Through this umbrella diagnosis, they altered existing cultural scripts about what families are and do in an effort to construct new and previously inaccessible disability worlds. In turn, this case study shows that the diagnosis of deafblindness itself can engender new kinship formations.

The ability to create and maintain this diagnostic kin community was simultaneously enabled and constrained by the marginalized place of people with disabilities, and exacerbated by the lack of social recognition and intelligibility of the deafblind spectrum. The typical GDI family with children at my main field site in Quetzaltenango shared two key features: one, the family lived within an hour or so of the city, and, two, the family included a child (or niece, nephew, or grandchild) who fell somewhere on the deafblind spectrum. Within this diagnostic umbrella, the children had a diverse array of additional labels, including cerebral palsy, spina bifida, rare genetic syndromes, undiagnosis, and a wide variety of communication, behavioral, therapeutic, and medical needs. Impairments sustained from birth injuries were markedly more present than during my later research in the U.S.

In a global context, this diversity of bodies recalled Tom Boellstorff's concept of "dubbing culture" (2003), which examined how identity categories travelled and translated outside of their points of origin. What happens when an identity category, such as the umbrella diagnosis of deafblindness, is applied in different cultural settings? What pauses, tensions, or even clashes emerged in the space between the on-the-ground realities and the label, as applied in this new setting? As Boellstorff writes: "To 'dub' a discourse is neither to parrot it verbatim nor to compose an entirely new script. It is to hold together cultural logics without resolving them into a unitary whole" (2003, 226). Like the visible gap in a dubbed movie between words one hears and the actual movements of the actors' mouths, I was struck by the fluidness surrounding deafblindness locally. I spoke with one GDI administrator who openly admitted her lack of concern to a strict diagnosis based on dual sensory (i.e., visual and auditory) impairments, arguing that the children all had multiple disabilities and lacked other educational opportunities. I initially found myself asking if the children I was meeting were "really" deafblind? I soon realized that this was beside the point. The significant issue was the power of the diagnosis to garner both therapeutic and educational resources, but perhaps equally important, its ability to usher parents into an otherwise inaccessible community. These families were united by their shared experiences with deafblindness – however different the experiences may have been, and however blurry the parameters of the spectrum.

The Story of Alex

This deafblindness movement in Guatemala can be traced to the efforts of a single family beginning in the mid-1990s. The mother, Helen, took a volunteer role at a shelter for orphans and abandoned children in the capital city. When Helen arrived for her first visit, all of the other children were participating in a group activity except for one little boy, Alex, who was in his room. She inquired with a staff member and was told that he was completely deaf and had some vision. He was the only child with known disabilities at the shelter.

Alex had been abandoned in a market in the southwestern region of the country. Someone – perhaps a family member – wrapped him in a blanket, placed him inside of a cardboard box, and left him in the women's restroom. As the story went, a local woman found him and took him home, but changed her mind once she realized the extent of his disabilities. He was taken to the police station, processed by a local court, and subsequently sent to the shelter in the capital.

Helen and Alex grew closer through her visits. Although she had never worked with people with disabilities, she was fascinated by the boy. He was thought to be approximately four years old at the time, although his actual birthdate is unknown. Helen decided to fund and arrange surgery to remove the cataracts in his eyes to restore some of his vision. She and her family brought Alex to stay in their home for one week prior to and following his surgery so that they could care for him, petitioning the shelter to let them assume his caregiving needs on a temporary basis. At the time of my fieldwork, he had been living with the family for over a decade and they had formally adopted him.

Helen threw herself into finding educational opportunities for Alex, determined to keep him from languishing in another shelter facility. She was told he could not attend the local school for the blind, because he was deaf; he was turned away from the school for the deaf due to his blindness. Helen contacted other service providers, but had few leads. Programs for children with multiple disabilities simply did not exist in Guatemala and, to complicate things further, the government did not recognize deafblindness as a specific category of disability.

After exhausting local options, Helen contacted several deafblindness experts based in the U.S. They put her in touch with a group of Argentinean parents who, when faced with similar obstacles, founded their own educational center. Helen grew increasingly involved in this dynamic transnational community of families and professionals, and she and her husband arranged to attend a Latin America-wide conference for parents of deafblind children. Armed with the personal insights from other parent advocates around the region, and with critical international support, the family launched GDI in 1997 and expanded the organization steadily.

During my research in Guatemala, the organization operated educational centers in the cities of Mixco (outside of the capital), Quetzaltenango, and Huehuetenango. It ran a Programa a Distancia (Distance Program), in which a special education teacher conducted home visits to children with disabilities in rural areas, and sent support staff to several shelter facilities to provide services to abandoned children in institutions. In addition to these direct service projects, it sought to raise awareness in communities, schools, universities, and therapeutic settings to increase knowledge about deafblindness and people with disabilities. Ultimately, GDI aimed to become the primary educational training center and resource provider on deafblindness and multiple disabilities in Central America.

In Guatemala, as elsewhere, such family-led efforts typically emerge out of necessity. At the time of my research, there was virtually no government support for special education in Guatemala, and disability programs were extremely limited. Since its inception, GDI has worked within broader global structures of deafblind advocacy. The deafblind movement in Guatemala represents a localized example of this global shift to the deafblind spectrum. It also illustrates the diversity of today's deafblind population, as well as the contestations surrounding the politics of diagnosis. Indeed, one of the most striking aspects about this movement was the demand for public – and legal – recognition of a population whose diagnostic label belies the diversity of bodies it described. Through this living experiment in shifting biomedical categories, deafblind children and their families demanded entry into a society that did not yet recognize them

The lack of attention to disability in Guatemala combined with the relative unintelligibility of the deafblind spectrum, generating needs that were both pragmatic and affective. On the one hand, these children needed educational and therapeutic services; they could not just sit in their homes, cut off from communication and socialization. On the other hand, their families were often in desperate need of support. Many had been cut off from their own relatives due to lingering beliefs that disability was either contagious or resulted from parents' wrongdoings; it was a disease or a punishment, and was best left alone.

Within this context, the recurring theme of community loomed large for students and their families. It was a necessity. GDI es una familia. Somos una familia. I heard these phrases repeatedly. Part of me dismissed it as jargon. However, as illustrated below by the story of Baby F, this group was actively re-writing the meaning of family itself around its shared diagnostic identity and locally-situated needs.

A Death in the Family: Diagnostic Kinship in Action

"Somos todos una familia," said parents and staff alike. It was one of the first things I heard from Sara, the director of the GDI branch in Quetzaltenango. On my second morning there, I arrived at the educational center to attend a human rights training seminar, which was organized by the Parents' Committee, a leadership and fundraising group consisting of parents from the school. There were just under 30 parents in attendance, with only a few men; about one-fourth of the women wore traditional dress (traje). At the end of the session, Sara came to the front of the room and said she had to make an announcement. Baby F, a boy in the classroom for the youngest students, was in extremely serious condition at a local hospital. He had fallen into a coma over the night and his organs were failing. Although the parents consented to disconnect the respirator early that morning, a doctor arrived later and insisted on putting him back on it; even so, it was only a matter of time. As all of this unfolded, the hospital was being fumigated and no one – including F's parents – could enter the facility. Their son was dying, no guests allowed.

The parents in the audience, who had listened quietly during the morning's seminar, sprang into action. The mothers took the lead. Within minutes of the announcement, they assembled a telephone tree to share any updates about the boy's condition; they also arranged for a group to visit the family's home that morning as a sign of support. Then, the women started to discuss the child's imminent death. One volunteered that, from her own experience, the hardest times came after the child's death. The mothers agreed that they needed to strategize to provide ongoing support for the weeks to come. Another woman who lost a child previously said that the sadness would not truly hit while one waited for death to come – while in the moment, busy, distracted - but afterward. That would be when the family would need the most support.

Many in the room had tears in their eyes as they discussed Baby F, and the sound of tissue packages crinkling and sniffles punctuated the air. It took me days to write up the notes from the event, not knowing the child or family, unsure of my boundaries as a volunteer and researcher in this institutional space. All I could think was: "Those people lost their baby." My initial reaction to the news about Baby F was that death was a private affair to be handled by family and close friends, and that I was an outsider who needed to be polite and get out. I was startled when parents and teachers asked me to stay and be a part of the day's events – to help with the children, prepare the center for the afternoon visitors, and greet Baby F's family. Uncomfortable with the unanticipated intimacy, I agreed.

As the impromptu planning session winded down, participants were invited to have some coffee and baked snacks. I chatted with Samuel, the father of a 13-year-old boy with multiple disabilities who loved to play checkers and communicated through limited sign language, gestures, and grunts. Samuel told me that his son's intellectual disabilities grew over the years as a result of his lack of appropriate education services; without language and formal learning, he lost skills.

Samuel and I talked for the next 20 minutes. He was a well-dressed, professional man in his fifties, clad in a cable-knit sweater over a plaid button-down shirt. He worked as a civil engineer, and spoke of projects locally and around the country. His wife had passed away the previous year. He began to ask questions about caring for people with disabilities in the U.S., and was surprised to hear that many adults lived in group homes or small, fully-staffed houses in their communities, rather than with parents or other relatives. I mentioned that my sister had such an arrangement – an unassuming two-bedroom house, complete with a fully stocked kitchen, roommate, cat, and around-the-clock aides. She lived a five-minute drive from my parents' home, where we both grew up. Samuel was visibly taken aback. "Is it also true that adult children place their parents in asylums when they get old?" he asked. I paused.

The mothers from the morning meeting were clustered in one of the offices, getting updates via cell phones from Baby F's family and relaying messages accordingly. Samuel needed to return to work, so we parted ways. I headed inside toward the center's four classrooms to see if I could be of use. I came across Carla, a teacher and physical therapist, who had only one student that day and invited me into her class. News came through while we were talking, and one of the teacher assistants asked me if I could watch a group of students. Mothers typically held a major role helping in the classes, but today they were out of commission. Baby F had died in the hospital and the women needed to begin preparations. His family would visit the school later that day; with them would be the child's body, if they were able to retrieve him from the fumigated hospital. The mothers needed to acquire decorations, food, and supplies for the event. They had only a few hours to prepare.

The children went home at midday, as usual, and one of the fathers volunteered to drop me off at a nearby shopping complex to grab some lunch and relax before returning to the center. The discord with the morning scene was surreal. Mercedes SUVs rolling in alongside pickup trucks filled with shoppers. Two pet stores complete with baby schnauzers, a husky, and clownfish; a food court with Burger King and Domino's Pizza; and a Hiper Paiz, or WalMart, which sported signs listing the content of each aisle in both Spanish and Quiche. I walked around for two hours, just taking it all in, killing time, and wondering why on earth I was at a mall, watching a Maya woman with packages balanced on her head chat on a cell phone in front of Taco Bell. Salsa music trickled out from speakers in the women's bathroom.

When I returned to GDI from the shopping mall, my taxi driver promptly announced "Someone died here." Startled, I asked how he knew. He pointed to the bow-shaped decoration made of white plastic paper, similar to a garbage bag, which had been placed on the building's front gates. It was about one foot high and three feet wide, prominently announcing the death to all who passed by.

People began filing in at 4:00 p.m. White and green plastic picnic chairs were arranged in a semi-circle in the lobby outside of Baby F's former classroom, where I chatted with parents and family members. The staff kept to themselves for the most part, clustering in the classroom to arrange decorations, prepare snacks for later, and console one another. The teachers and aides wore more or less matching outfits: tight jeans and fitted white tops. I began to feel out of place in my knee-length black dress.

A white, cloth-covered table and white backdrop sat at the front corner of the room opposite the entryway, where the men of the family would later place the tiny, white cloth-covered coffin. Staff arranged bouquets of flowers – all white or yellow, lots of gladiolas, daisies, spider mums – on the floor surround the table, where they also propped white candles wrapped in metallic ribbon. Every 20 minutes, someone announced that F's family would arrive shortly. This became a ritual over the two hours spent, which I spent chatting with the mothers about my sister, marriage, future children, and, lastly, my research. The mood was quiet, yet not necessarily somber. Pensive, pending, matter of fact. Finally, Baby F's sister walked in crying. She began to make her way around the room hugging each person, one by one, as they whispered to her. Things were beginning.

The little boy's sister sobbed. Within minutes of arriving, she asked permission to hold one of the children from Baby F's class. She pressed her face close to the girl's – nose touching nose, breathing silently. She then turned and walked outside with the child in her arms, returning a few minutes later to deliver her back to her proper parents. A mother and I caught each other staring, smiled, and left it at that. Baby F's parents walked in about five minutes later. The change in the room was immediate, as people began to cry audibly, hug one another, and mutter condolences to the family. Several male relatives carried in the tiny coffin and placed it on the table in the front corner of the room. Approximately 10 people accompanied them, crowding into the small space. Attendees gathered in a jagged line at the center of the room to offer their condolences to the parents, one by one, again hugging, crying, and saying a few words. When it was my turn, I realized that I had no idea what to say. I hugged the parents and sister silently, both for fear of saying the wrong thing and also because I knew I, too, would start to cry.

After the condolences, Baby F's aunt rose to address the crowd. She thanked the community for its show of love and support, and then led them in two prayers. She spoke, everyone repeated what she said, and at the same time a teenage boy from the family chanted his own prayer on the off-beats, almost as a harmony. The effect was startlingly fluid and musical. Next, Baby F's father stepped to the center of the room to speak. His voice shook as he thanked God for sending the family Baby F, for teaching them what it meant to be, to have, and to love a child with disabilities. He said that anyone who thought that he and his family would give up their deafblindness advocacy after Baby F's death was mistaken, that they were going to continue supporting GDI's efforts for children with disabilities. He would break for a few days to honor his son's death, but would recommence his activism the following week. The father, who celebrated his birthday at the school several weeks prior, was adamant that he and his wife would remain committed to the organization, which he referred to as his family. He used the term several times. Finally, he said that he knew that Baby F was now in a better place with a new body – one without pain, without convulsions, without sickness, without suffering.

Next, Sara, the school director, spoke on behalf of the organization. Her voice was very soft, almost difficult to make out in the crowded space. She reiterated the strength of the community, and that everyone would continue to support Baby F's family as they had since the beginning. She thanked the parents for bringing the child into their lives, saying that he would remain alive in everyone's mind and memory. "We will continue to see him," she said, "because he is here with us."

Reflecting on the events, it is impossible to overemphasize the stress on diagnostic kinship as a key source of support and unity. The attendees framed their community in two complementary terms: first, under the diagnostic umbrella of deafblindness, which united their children's seemingly divergent bodily forms and impairments; and second, through their shared involvement in this locally distinctive school community. The connection among those in attendance was palpable, visible through eye contact, soft words, body language, nodding silences, and mere presence. It came off as strikingly genuine. The parents (and, to a different extent, teachers) took Baby F's death as a cause around which to mobilize. It was such a show of strength and power, a community coming together in action. For these children and their accidental activist parents, rewritten families were much more than a kin group or source of affective support. They were a lifeline, even after one's final breaths.

At the close of the speeches, Baby F's family departed – some men having shed tears, a few silently and determinedly dry-eyed. They headed to Huehuetenango, where the father's family lived. After they left, staff and families milled about drinking sweetened coffee from Styrofoam cups and eating cheese sandwiches that some of the mothers and teachers had prepared earlier. The staff informed me that classes were canceled for the following day. Many of the families had decided to travel to attend the burial.

Coffee cups empty and sandwiches eaten, people began to trickle out for the night. We all gave everyone the requisite hug and kiss, muttered something utterly neutral ("Take care!" or "See you next week!"), and headed out the front door. Having been there only during the daytime, I was startled by how difficult it was for me to navigate the terrain in the dark: turn left, walk across the dirt path, be careful not to fall into the meter-deep gutter lining the side of the road on one corner, dodge cars at the roundabout, and wait for the bus, an old decommissioned U.S. school bus, in front of the metal fence at the makeshift bus stop. "Los Trigales, Los Trigales!" the driver's assistant called out. I hopped on and made my way down the aisle, sitting next to a tall, thin man in business clothes.

Sure enough, there were multiple familiar faces scattered around the seats, all minding their own business and staring out darkened windows as the bus hummed through the city. I recognized a husband and wife a few seats up who were sitting with their sleeping daughter, who was blind. She was the child Baby F's sister had turned to during the wake. When I met the girl the following week, she ran her hands softly over my face, reading my features, recording a tactile portrait to store for the future, just as she had with Baby F's sister. It was a silent act, almost unerringly intimate. The pads of her thirteen-month old fingers traced my nose, eyelashes, mouth, jaw. They followed the lines to remember the face, not as I might struggle to recall features of someone I have just met, but as part of a non-visual recognition and memory that put me to shame. I was amazed by the seemingly instinctual nature of the act, the use of touch as communication and recognition. I had felt this before, but something about the little girl stayed with me, perhaps the uncanny nature of our encounter on the public bus, careening through streets that suddenly seemed unrecognizable in the darkness as we headed home after a death.

"But I don't have to eat with the child, do I?"

For these parents and children, diagnostic kinship provided critical support and countered the pervasive alienation of families like theirs. It also offered an idealized alternative to what were described as widespread failures of extended families and local communities to assist with basic care needs. GDI's directors and teachers spoke consistently of the isolation of their students' families, due largely to the strength of stigma against disability. As Laura, the director of the smallest and newest GDI branch, explained: "Extended families have neither contact with nor interest in the child with the disability. There is a great deal of discrimination." Reasons ranged from shame (vergüenza) to the widespread notion that disability is a curse (maldición) brought on by the sins of parents. There was also fear that it was contagious, something threatening to contaminate others. Some people I spoke with attributed this to religion, without specifying what branch or denomination, while others claimed the roots of shunning stemmed from indigenous beliefs.

Part of the anthropological project is to render the strange familiar and the familiar strange. Much of what I encountered during my preliminary research on Guatemala surprised me initially. Stories of abandonment and neglect, of being cut off from extended families, peer groups, or religious communities. I thought back to this during my later research in Texas, when I encountered multiple parents who spoke with anguish about being asked to leave their churches because of their children's disabilities. Ostensibly, this was because the churches lacked the infrastructure to accommodate the children, an effect of their exemption from the Americans with Disabilities Act. However, families remained haunted by the sudden disappearance of community and social support. As one mother explained: "We felt excommunicated." I began to wonder if the modes of erasure and abandonment at my fieldsite in Guatemala were so different from what I might find closer to home. What might this reveal about the public intimacy of disability aesthetics? What did it mean when bodies deviated in particularly – and particularly visible – ways, and how did this undo expectations of bodily, sensory, and intellectual integrity?

During my discussions with Sara, the director at my primary fieldsite, she spoke at length of the need to reach out to extended families through awareness-building programs. She said that there was a significant problem in this region in that children with disabilities were often hidden in their parents' homes. Alternatively, she explained, families would attempt to cover up their child's difference: "Parents will lie about it. If you say, 'But, yes there are children with disabilities here. Look, that child over there is unable to walk,' the response will be, 'But it's because he doesn't want to.'" Sara stated that it was the norm in this region of Guatemala to abandon parents of a child with disabilities, as well as the child. This was rooted in fear that disability was a sickness that could be passed to others within a family if contact was allowed, and resulted in taboos against eating or sharing food with people with disabilities. According to her, this was an extremely strong cultural current and was part of what made disability work in this region of the country so distinctive. It is worth noting, however, that my subsequent research in the U.S. revealed many of these same themes. They were simply a bit deeper under the surface of everyday conversations.

Such insights are the direct product of comparative ethnographic work and are thus highly relevant to disability studies. My initial focus on complex diagnostic forms in Guatemala pulled my attention toward forms of care, kinship, and isolation that I thought, at times, I had not and would not encounter closer to home. Only by juxtaposing these ethnographic scenes with my subsequent research in the U.S. did it become clear that many of these same phenomena – including diagnostic kinship – traveled and translated in seemingly diverse spaces. Through this comparative perspective, the familiar began to appear stranger than I had realized.

To counter misconceptions about disability, GDI launched a program to reach out to relatives and build awareness and community support. The school hosted special days when it invited specific relatives of the students to participate in classroom activities, games, and lessons. Sara reported significant resistance from extended families at first, quoting one grandparent who said, "I'll come, but I don't have to eat with the children, do I?" Gradually, the initiative took off, with more family members attending each time. Sara said that families were often amazed when they came to the center and saw the students' work. "I never knew a child with disabilities could do that!" Bit by bit, the program was changing perceptions.

I was struck by the perceived danger attached to sharing a meal with a child with disabilities. This phenomenon highlighted the mundane, everyday processes of isolation (Povinelli 2011). As Elizabeth Povinelli writes, abandonment unfolds as a slow burn, rather than a spectacle. There is no isolated event or moment of rupture, but rather a meal denied, medication not given, set of eyes averted, window shades drawn, birthday ignored, invitations not extended. In turn, the cases of disability in general and diagnostic ambiguity in particular offer new possibilities to explore the classical anthropology question of the relationship between the individual and society through the lens of exclusion. Here, abandonment took hold through the sedimentation of everyday acts, such as a refusal to eat with another person.

To gain insights into how these processes operated on the ground through everyday practices and underlying beliefs, I found it was often more fruitful to ask not what an individual believed about a sensitive or controversial issue, but to reframe the question in terms of what they thought others in the community might hold true. This methodological sleight of hand took the weight off the informant-as-truth-bearer, opening a space for the nagging doubts that one knows should be dismissed as superstitious but are not so easily abandoned in practice. I recalled a conversation with a friend in Quetzaltenango who happened to have worked previously at a local shelter for abandoned children with disabilities. She spoke of a former co-worker who left the job after getting married and subsequently gave birth to a child with disabilities, although I was not told what type. The woman's husband blamed her for the disabilities, claiming it was her fault because she had worked at the shelter. At this point in the story, my friend and I both shook our heads, but there was a pause. "That's not possible, is it?" she asked. No, I reassured her. And yet, on some level – if speaking honestly – I knew we both had our doubts, despite knowing better.

Notions of maternal marking or responsibility are hardly unique to Guatemala. As anthropologist Leslie Reagan (2010) explains, for example, the belief that a pregnant woman who encountered a child or adult with visible disabilities on the street might somehow pass them onto her otherwise typically developing fetus was once common in the U.S. In a similar twist of logic, parenting a child with disabilities is often spoken of in almost pre-ordained spiritual terms. "God only sends special children to special families" was a refrain I encountered frequently during my later fieldwork in the U.S. In both the U.S. and Guatemala, I heard repeated claims that sought to make sense of the appearance of disability in the family. Particular parents had particular children for a reason. They were up to the challenge, the logic held, and they would fight for their children. The children were referred to as miracles and angels, the mothers as warriors and saints.

On the opposite side, I encountered several parents who had previous experiences with disability in their families and were shocked that it could happen again. One woman, a presenter at a disability advocacy conference for families in Texas, spoke of her experiences having both a sister and daughter with Down syndrome. There were audible gasps of surprise from the audience. How could that be? Such responses hinted at the underlying affective, illogical terrain of making sense of disability when it emerges. Yes, disability is a part of the human experience, but questions remain regarding how, why, and when it appears in individual families, and how it is interpreted. To dismiss such nagging doubts or fears as superstitious or unscientific fails to capture their ethnographic – and lived – significance. It also privileges the assumed reign of biomedicine in the U.S., despite widely known examples of contemporary medical folklore, such as the lingering fears connecting childhood vaccines to autism (Biss 2014, Kaufman 2010, Mnookin 2012). One central task for anthropologists and other disability scholars should be to take superstition and collective conjecture seriously as both localized and more far-reaching phenomena. By probing the similarities and fissures of what happens when a particular category or mode of understanding travels, scholars can build broader comparative knowledge of disability experiences and encounters in a cross-cultural perspective.

During my extended fieldwork in the U.S., I spoke with a mother of a young boy with a very rare genetic mutation who shared similar thoughts. She described how, when her son was born, her extended family struggled with the notion that they had already encountered disability. They had met their quota, in a sense, and thus believed on some level – albeit based on emotion, rather than reason – that it could not possibly happen again. As she explained:

My cousin is profoundly, profoundly disabled, both mentally and physically. He had a birth accident. My aunt has taken care of him forever, but the one thing her mother told her was "Don't ever stop working." And she didn't, but she also made herself and her life miserable. It was always 'I got stuck with this lot in life and everybody else gets the normal family and the normal childhood.' And I just saw that happening and I wasn't going to be angry at myself and at everybody else…It's really, really sad. And she'll admit it's a really sad life. It wasn't for lack of money. It was just personal…Her husband left her when her son was three and it was possibly the worst case scenario, and I know when we found the diagnosis everyone in my family was like "How could this possibly happen to us? This has already happened."…It felt like a real, "what did our family do to deserve this?" I don't know. I think you just take what you get.

The passage above rests on the underlying assumption that disability is undesirable and will, in turn, negatively impact families and kin relationships, a topic that has been explored by scholars in a variety of cultural contexts (Gammeltoft 2014, Rapp 2000). It positions the family with disabilities in contrast to a mythical and ideal other, failing to account for the fact that family structures, experiences, and narratives are complex, dynamic, and multi-dimensional assemblages. Disability cannot happen twice, or so goes the thinking. But why? Digging a bit deeper, it becomes clear that a superstitious and emotionally infused logic lies just below the surface, just out of sight; a still pervasive interpretive frame that embraces a curious combination of ableism, medical folklore, and homogenizing views of what disability is and how it operates.

Fieldtrip

Near the end of the summer of Baby F's death, I traveled by boat, truck, and bus from my guesthouse in a tourist town lining Lake Atitlan to meet a GDI teacher from the capital at a nearby village. She was making her weekly visit to local families of children with multiple disabilities, offering tips and strategies to encourage basic daily living skills and also just to check in and see how everyone was doing. The children we met had a variety of combined disabilities – intellectual, sensory, and physical – and spanned an age range of almost 20 years. As I stepped off the bus, children at the house across the road ran out to greet me. I was immediately surprised to see that at least two of them had visible disabilities, indicated by both atypical facial features and communication styles. Although disability experts did not know why, this area had a particularly high incidence of multiple disabilities. It was instantly apparent.

After visiting several families we made our way to the final home of the day, which consists of several structures clustered around a dusty yard. The teacher was startled to find one of the buildings closed up tightly with a small padlock, the kind one might use on a suitcase. She had not seen this before, not here. She peeked through a small hole in the wooden panels nailed together to form the home's door and walls, and she immediately pushed back sharply, summoning a small girl of maybe six or seven years who played nearby. The girl said that the woman of the house – the mother – had gone with her daughter to a nearby lake to wash the family's clothes with other local women. Was there a spare key, my companion asked? The girl ran to fetch it, eager to please this professional from the city and eyeing me curiously. She opened the padlock and we stepped softly into the room.

There were three twin bed frames in the dark room. There were no lights on, although the elaborate stereo complete with a three CD player suggested that the structure had electricity. Jagged, narrow sheets of light filtered in from holes in the metal roof. A young man lay on one of the beds. My companion said he was in his early twenties, although I would have put his age at much younger. His mouth twisted into a surprised grin and he squealed with pleasure at our arrival. He was alone, lying in the dark on a wooden plank of a bed frame with no mattress. Unlike the others in the room, his bed was wrapped tightly in a patchwork of carefully taped together black trash bags. The stench of urine was lighter than I would have anticipated – he had no access to a bathroom, closed up like this. The black plastic was hot to the touch, warmed by his body.

The young man could not talk and had never received therapeutic services, aside from these new weekly visits. Indeed, I was told that such services barely existed in Guatemala at the time of my research, and certainly not in rural areas like this. The tendons in his legs were hardened from years of not moving. We massaged them and encouraged him to bend his knees as best he could, just for a little exercise. We laughed and joked and, although he could speak or sign, the young man communicated through shrieks of joy, sly smiles, and peaceful sighs.

His mother returned after a half hour or so, along with her daughter. The girl, a teenager, also had visible intellectual disabilities. The mother told me that her husband was in the States in search of agricultural work. He'd been there for years. The teacher interjected, deferential yet firm, and asked why the woman had left her son closed up in the dark heat, alone. She had not witnessed this before and was struggling visibly to make sense of the scene.

The stereo, replied the mother. If we don't lock it up, someone will take the stereo.

The example pushes back against idealized models of family and caregiving, offering a critical reminder that care is fraught. It invites the reader to pause in the image of this young man, left alone in a dark, warm room, the smell of urine wafting through the air. My initial impulse following this encounter was to place the scene in opposition to my observations of GDI's families, but to do so would tread dangerously on the terrain of inspirational versus tragic forms. On the ground, family and care are not so simple. Inserting an ethnographic lens into disability studies, as I have in this piece, reveals clearly that idealized and imagined forms of caregiving and kinship do not necessarily match reality. We must look beyond a normative frame, asking instead what forces, conflicts, tensions, and both pragmatic and affective needs complicate how these concepts take shape in daily life. This is a fruitful area for critical disability studies, and much can be learned about underlying assumptions regarding care and care roles by staring into the murky territories of love, neglect, and even violence. Simplican (2015) cautions that recipients of care work must not be framed as wholly vulnerable and lacking agency, arguing that scholars must account for caregiving in the intimate spaces of conflict and risk. Nancy Scheper-Hughes (1993) and Anna Tsing (1990) show clearly that maternal love cannot be taken for granted, with care expectations and abilities shaped by individuals, structural constraints, and local worlds. Ethnographic consideration of such failures to care – as in the case of the young man behind the padlocked door – highlight the dynamic, potentially fraught realities of caregiving and kinship as unfolding, embodied, and often mundane.

Aftermath

I continued to return to these ethnographic scenes long after moving my research closer to home. Six years after Baby F., four years after shifting my research to the U.S. to study diagnostic ambiguity and disability marginalization closer to home, I logged into my computer one day and learned that a child I had met conducting fieldwork in Texas had passed away. He, too, was on the deafblind spectrum and had multiple disabilities as a result of a rare genetic disorder. Had he been born only a few decades earlier, he would have gone undiagnosed because his syndrome had not yet been discovered. His parents were very active in a statewide group for parents of kids with this diagnosis. I remembered them telling me they were thinking of adopting a child with disabilities; so many children were abandoned and left in "the system," they explained. They understood what it meant – or could mean, perhaps – to parent a child with complex impairments and medical needs, and they wanted to share their skills and knowledge.

I began to think of how disability and death weave together. Two seemingly separate categories, particularly in the disability studies literature that focuses more on the social and rights-based aspects of disability experience – stigma, ableism, and practices that push disability to the margins. Yet disability is increasingly less marginal as more and more children receive diagnoses, enjoying new forms of public recognition and visibility.

Despite the scholarly tendency to separate disability as a cultural and political reality distinct from the bodies through which it unfolds, parents I spoke with consistently stressed corporeality. Bodily experience, rupture, and memory loomed large. Mothers I met in Guatemala began their disability narratives with scenes from pregnancy and birth. They spoke of children caught in the birth canal, worries about exposure to chemicals from fathers working in agriculture; access to medical care and good nutrition came up frequently. I heard that women who received an epidural did not "love" their children the same way, as they had not experienced the full pain of childbirth – a claim not unlike the so-called natural childbirth movement in the U.S., which frames birth without medical intervention as more natural and thus and desirable. To borrow the classic anthropological trope of purity and danger (Douglas 1966), the common thread was an anxiety about outside intrusion. There was a persistent belief in an imagined non-disabled future thrown off course, perhaps by the sin of a parent, an illness, vaccine, birth accident, or other exposure. A moment that altered what was otherwise supposed to unfold without incident.

I recalled a young mother I met at in Quetzaltenango. Thin, pretty, and well-dressed, she mentioned that her mother lived in the U.S. We chatted while watching her toddler twin girls play on gymnastic mats, working on physical therapy exercises. The story of the twins always got to me. One "normal" and expected, the other not. One daughter ran in circles, jumping and crawling on foam shapes in primary colors. Her sister lay on her belly, smiling calmly, clad in all pink. The mother spoke of complications during the birth. She was not offered a C-section ("Even in a private hospital?" I asked, having been told such things only happened in the public facility) and there were complications. The little girl was stuck in the birth canal and suffered oxygen deprivation. Both girls went to the neonatal intensive care unit (NICU), where the firstborn thrived. Her sister's condition did not improve and she didn't begin to gain weight until they were put in the same bed together.

Several years later, I met a father at a family deafblindness symposium in Texas. He was an activist from Spain who traveled the world sharing his family's story with disability parents, educators, and advocates. His daughter, like so many I heard about, was born so premature that she would not have survived in previous eras. She spent months in the hospital, and the treatments that kept her tiny body alive resulted in extreme damage to her sight and hearing. She is considered deafblind. Her father recalled how she suffered a series of hospital-related infections and had to be kept for a time in isolation, protected from other invading germs. The fetal form, misplaced on the outside world, out of sync, and locked away. Curiously, the child's twin sister flourished. To date, she has no markers of the early arrival that the girls shared. But bodies like theirs are too young and too new for hard data. The outcomes are not yet known, as they have only existed for a quick breath of recent biomedical history.

During a presentation on parent activism, the father riffed on his own questions about how his daughter experiences the world. "She would poke her eyes," the man explained to the meeting attendees. He raised his hand to demonstrate, extending a bent index finger and moving it quickly, jaggedly, toward his eye. The microphone captured the room's silence. "Again and again, she pressed her fingers into the sockets. Can you imagine?" he asked, then continued. "But to her, it didn't hurt." He paused. "No, I imagine she saw stars. Sparkles, maybe, little lights." A woman in the audience raised her hands and reached for the microphone, crying. "Thank you for that beautiful story," she said. "It brought me much peace." Her daughter's left eye had been surgically closed to prevent her from indulging in the same activity.

These "strange" or atypical behaviors fell within the parameters of the "normal" and familiar within this disability world. This is not to say they were sanctioned, but much like practices of self-abuse (e.g., a child banging his head on the floor or biting himself), they were part of regular life. Those were the extreme cases, of course, and often it was simply a matter of harmless tics and quirks. While at GDI, for instance, I attended multiple meetings of parents during which children grunted indecipherable noises or had other verbal outbursts, yet nobody registered this as out of the ordinary. These mannerisms went largely unmentioned within this disability space, similar to anthropologist Zoë Wool's (2015) ethnographic observations of returned and injured soldiers in the U.S. Wool noted the shifting nature of what counted as "normal" or expected expressions of the body was markedly different for soldiers at her fieldsite, a residential facility at the Walter Reed Medical Center, as opposed to in public spaces. Just as a new prosthesis, wheelchair, or crutches might be "unmarked and unremarkable" on the grounds of Walter Reed, the embodied habits of children at GDI held a fundamentally different role on the school grounds (Wool 2015, 134). It was not simply that they were accepted or without stigma. Rather, they became ordinary aspects of everyday life, with such expressions and actions lying within the realm of situated expectations of what bodies are and do.

The Spanish presenter's daughter was deafblind, the result of extended experimental treatments in the neonatal intensive care unit following her birth, 21 years ago and four months too soon. Although his daughter's eyes could not take in sensory data about the world when they were open, the story shifted once they were shut. A good firm push with the fingers – perhaps tentative at first, but then deeper – and what? Stars and sparkles? The girl retained sufficient retinal activity to stimulate this probing spectacle, at least that's what the father had been told. Thus his daughter's eye pushing, which appeared at best to be an antisocial habit and at worst self-abusive, was a form of leisure. It was a perhaps a thing of beauty, bodily explosion of the senses, a critical indulgence for someone in need of sensory engagement. And, among the father's audience that day, it was a behavior that was only so shocking.

After his presentation ended, I waited until other audience members had a chance to speak with him and then approached him as he exited the room. I introduced myself and we began speaking in Spanish about my research and his international advocacy efforts. Within moments, he mentioned GDI and their work in Central America, and asked if I knew the founding family. I was caught off guard by our connection through global deafblindness work. "How incredible that you're from Spain, I'm here, and we all know each other!" I exclaimed giddily.

"Of course we know each other," he replied, casually as we parted ways for lunch. "We are all family."

References

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Endnotes

  1. Note that the names of individuals and organizations have been changed to protect privacy, except when permission was explicitly granted or in the case of public figures. The names of cities have not been altered.
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