Faye Ginsburg and Rayna Rapp participated in "Marginality and Exclusivity in ART Practices," a panel discussion at The Scholar & Feminist Conference 2009, "The Politics of Reproduction: New Technologies of Life," held on February 28 at Barnard College in New York City.

Listen to a podcast of "Marginality and Exclusivity in ART Practices."

As veterans in the study of the politics of reproduction, we would like to propose that the topic of this special issue, Critical Conceptions: Technology, Justice, and the Global Reproduction Market, be expanded temporally to account for how such practices reverberate through the life cycle, beyond the immediate concerns usually associated with the word reproduction. In our current work, we examine the life course consequences for families, extended kin networks, and broader encompassing communities when reproduction "goes awry." In particular, what happens when fragile infants are born and sustained through the interventions of neonatal medical technologies? Many of these children now survive who might not have in the past, especially those born at low birth weight after the use of assistive reproductive technologies (ARTs). Of those, approximately 25% emerge with lifelong disabilities, which may range from global impairments to subtle cognitive differences that don't show up until children enter school.

Our research explores the lifelong consequences of this situation: the steadily increasing use of neonatal technologies, most notably neo-natal intensive care units (NICUS), but also less heroic medical interventions such as infant and pediatric versions of portable oxygen, pharmaceuticals, and alternative feeding systems. These enable a much larger range of medically challenged infants to survive. We argue that such "disruptions of reproduction" have unanticipated socio-cultural effects in the daily lives of those engaged in using them as one moves through the life cycle. We are engaging this very broad theme through the specifics of our current field research, looking at cultural innovations in the world of learning disabilities in New York City. Our work suggests that this remarkable "epidemic in learning disabilities" (as some call it), cannot be understood apart from the politics of reproduction that characterizes the present moment in the developed world. The statistics suggest that the extraordinary rise in the LD population—currently about 15% of all U.S. students, doubling every decade since the 1970s—is in large measure due to this expanded medical horizon. Our focus on this under-recognized dimension of expanded health supports in the "niche of reproduction" raises important questions regarding the relationship between medical technology and social justice.

With more and more premature and medically compromised infants surviving, the consequences of technological interventions are felt most intimately and significantly in the lives of families, often far beyond the temporal limits of neonatal wards, at least in western countries where these technologies have become routinized. Now, as American families are no longer encouraged to institutionalize their atypical babies, as was the norm until the 1970s, it is not simply reproduction, birth, and early infancy that are disrupted. As babies with disabilities grow, many assumptions about kinship relations, domestic cycles, and community membership are challenged as well. The arrival of disabled infants into families, in most cases, rearranges presumed narratives of "normal" family life, as parents, siblings, extended family, and a broader community learn to reframe expectations of everything from developmental milestones, to introducing sign language and ramps in places of worship, to discovering what constitutes a "least restrictive" educational environment. Learning the ropes of living with disability is often fraught with resistance and prejudice; struggles inside and between families, communities, and institutions frequently entail expensive interventions in situations of scarce resources as is dramatically apparent in the battles fought by parents of children with autism to get state funding for costly education.

Over the last three decades, people from diverse cultural standpoints have been struggling to craft a counter-narrative and political project inclusive of people—and especially children—with disabilities who had been marginalized in segregated social spaces. Their activism has been crucial to legislative, juridical, and policy transformations that laid the groundwork for the recognition and inclusion of students with LD. These include the following:

• Deinstitutionalization brought several generations of children and young adults into their families and communities, requiring a range of supports for their care, including the accommodations necessary for them to have a "free and appropriate public education."
• Access to education was enabled by disability rights legislation beginning with the Individuals with Disabilities Education Act in 1975 (and periodic reauthorizations), followed by the passage of the Americans with Disabilities Act in 1990. The systematic conflation of the segregation of children by race and special education was challenged through further litigation.
• The rise of special education including educational psychological testing, and its expansion beginning in the 1970s intersected a longstanding debate about "Why Johnnie Can't Read" and energized by Cold War concerns about American education.
• The growing medicalization of atypical children emerges with the rise of neuroscience and child psychiatry; these fields catalyze the experimental and routinized use of pharmaceuticals as the "solution" to the "problem" of cognitive and emotional difference.
• Positive, complex, and more realistic media representations of people with disabilities—which had been almost completely absent from the American public sphere—began to emerge in the late 1970s in film and television, with a notable paradigm shift in 1989 with the four-year run of the ABC television series Life Goes On, the first to have a major character with Down Syndrome. This representational landscape expands dramatically with the proliferation of social and user generated media in the 21st century.

These large-scale transformations in the American public sphere are necessary but not sufficient explanations for the rapid expansion of the diagnosed population as well as popular awareness of those with "special needs." As anthropologists we argue that the cultural changes creating "an LD world" are far more complex. Innovation occurs not only in courts and classrooms but also in other arenas, from media to medicine, most notably in the intimacies of domestic life, usually organized through kinship relations.

The New Kinship Imaginary

While our research initially targeted what we are calling the "cultural innovators" who are reshaping schools, diagnostic categories, and media representations to accommodate children with disabilities, we noticed that all of these projects were deeply informed by the "paradigm shift" families experienced as they realized their lives didn't map easily onto pre-existing models of American domesticity. "Cultural Innovation in Special Education," the title of our current fieldwork, sprawls in many directions. Despite our best efforts to contain it, such differences are promiscuous violators of the walls erected by medical manuals and school bureaucracies. In addition to the "visual activism" of the films discussed below, our work tracks the sites where the landscape of learning disability is transforming most rapidly. Our multi-sited research includes:

• Fieldwork in neuroscience and epidemiological psychiatric research labs, where scientists search to understand brain differences among children;
• Interviews with heads of schools and programs which are particularly accommodating to children who struggle with conventional educational skills and demands;
• Work with families whose children have Individualized Education Plans (IEPs), the Board of Education-assigned passport to special education services, in order to understand their perspectives on the janus-faced gifts and poisons of having a child labeled and remediated;
• Ethnographic analysis of and participation in the visual and narrative mediation of what we call the disability Media World;
• A rapidly changing mediascape, from activist documentary to reportage and experimental works to social media such as YouTube, to new medical imaging technologies such as fMRI, which is increasingly used in brain research on cognitive differences;[1]
• And engaged participation in the building of "transition programs" for students who have grown up with the institutionalized benefits and burdens of Federally-mandated Special Education labels, only to find themselves without continued support or a clear pathway towards a fulfilling adult life as they leave high school.

In terms of families, our data set is drawn from a sample of over forty interviews conducted in 2009-10 with mothers who we contacted or who contacted us via several Internet support groups for families involved in special education in the New York area where an announcement of our research project appeared. While all those we interviewed consider themselves to be strong advocates for their children, most are not oriented toward more formal activism with one or two exceptions. While all our interviewees had to have computer access in order to respond to our call for interviews, most were of modest economic background. Additionally, the sample "snowballed" beyond Internet group members as interviewees spontaneously passed on our names to friends they had made in the process of getting services for their children. We were particularly impressed and moved by the desire many women expressed to be interviewed and have their struggles formally acknowledged via our work. Many spoke compellingly about the need for the stories of families such as their own to be heard by a broader public. Although we did not sample initially for diversity, the people who volunteered as research subjects were drawn from all five boroughs and represented multiple racial, ethnic, class, and educational backgrounds. Approximately 30% of our sample is African American; about 15% is Hispanic.

Based on our research, it is apparent that advocacy is widespread—often crossing class and race lines; parental vigilance, with rare exceptions, is almost a requirement if a child is to receive appropriate services. We also underscore that the meaning of educational credentials—and what it means to have LD—has changed due to a number of developments that have greatly enhanced the social acceptance of children with disabilities. Central to this shift in the zeitgeist is the familial expectation of their rights as citizens, including the rights of their children to a "free and appropriate public education," despite the uneven distribution of services and the complexities of current bureaucracies and educational law. In other words, we argue that parents (and especially mothers) are increasingly engaging in advocacy on behalf of their children—from modest efforts such as fighting for a classroom placement, to deeply engaged actions of those who organize "speak-outs" and demonstrations at City Hall in support of inclusive education. While stratification remains an enduring aspect of American education, advocacy is also increasingly broadly distributed. Indeed, we would suggest that one of the under-recognized legacies passed on from the activist parents is the growing recognition of the necessity of all kinds of parents—and especially mothers—to learn to "work the system" on behalf of their atypical children. Of course, this does not solve the inequalities of the system and the fact that most families are not engaged in these processes on behalf of their children; as we explain below, simply navigating the system can be overwhelming and intimidating.

With nearly every interview, we heard stories about how families have had to reimagine everything from household budgets to school careers, to sibling relations, to models of humanity that take into account life with a difference. We argue that the stories our respondents told us about living with disability—from the moment of birth onward—collectively constitute a "new kinship imaginary" with temporal and social implications. Not only does this new imaginary map an emergent terrain that encompasses a broader range of humanity; it also reframes the implicit norms and expectations of the consequences of reproduction over the life course as the "difference of disability" reverberates through the domestic cycle, changing its rhythms in unanticipated ways.

These reverberations and their impact on cultural imaginaries are thus fundamental to our analysis, bringing us back to kinship, a human system that is resilient, demanding, and—at its best—adaptable. Such "new kinship imaginaries" are widely distributed in ethnographic research on ARTs as well as queer theory and science studies that demonstrate innovations in kin relations to accommodate new technologies of life: radical transformations in intimate relations are normalized in the language and practices of familism. Some of these differences—such as the use of assistive reproductive technologies during a limited period of their domestic cycle for couples with problematic fertility—are more easily absorbed into typical family narratives once a healthy pregnancy is achieved. Other kinds of difference, such as 'queer kinship' or the incorporation of disabilities into family life that is our topic, endure in publicly visible ways over the domestic cycle, thus requiring new kinship imaginaries at every level, from family rituals to state bureaucracies. We have been struck in our work that kinship ties are 'everywhere,' a diffuse and powerful 'back story' to not only a changing kinship imaginary but also a transforming social narrative.

It isn't just the powerful resignification of kinship between children with disabilities and their parents and other relatives as transformative that we want to note.[2] Coming to grips with learning disabilities leads not only to potential activism, but to the changed shape of a life cycle for that child and his/her intimate others, and their domestic cycles as well. When a child's education is "stretched out" to accommodate difference, so is the time of parenting. When children are excluded from school or must be represented in a battle to access and retain services, so, too, does the domestic unit change to incorporate such struggles and exclusions. When a child's developmental narrative is rewritten by a relatively late diagnosis, so, too, is the family's sense of its history refashioned. When family members experience a "dead end" in the search for innovative services or therapies that might enhance the life of their disabled members, some may become inventors, researchers, project-providers. When children grow through adolescence into a trajectory that does not entail the expected reproduction of class and culture, they travel into an unanticipated future, taking their families along with them. It is in this absence of a recognized kinship narrative, we suggest, that families create new kinship imaginaries, and it is to some examples of these to which we now turn.

Mediating Kinship

Imagining inclusion does not take place in a neutral public square but on local side streets shaped by particular worldviews. Some may be inhabited by upper middle class professionals in their townhouses in New York City's fashionable Tribeca neighborhood. Others are the turf of Orthodox Jewish boys in a Philadelphia suburb who go to Yeshiva and play baseball wearing yarmulkes. Still others are artists and their offspring, who live in more bohemian quarters in Fredricksburg, Virginia. In short, kinship is neither transparent nor uniform; it is always local and culturally inflected.

The following three examples are drawn from the wide array of media productions we have encountered—from feature films to D.I.Y. uploads on YouTube. In this case, they demonstrate narrative approaches taken by families being represented by different media genres: Oprah Winfrey's popular mass mediated talk show in which an established fashion designer confesses her path to knowledge from a driven career woman to an activist mother helping her daughter diagnosed with LD—and other children—to have an opportunity for an education; an independent documentary film with a targeted outreach campaign to religious communities, using the story of a family helping prepare their son with Down Syndrome for his Bar Mitzvah; and an experimental first person digital animation offering an alternative framework for understanding ADHD across the life course. Together, these films give a vivid sense of how different each of these life-worlds can be—even under the broad rubric of middle-class American identity—and how they catalyze different discursive strategies in order to address the imagined audiences that are part of the class fraction and cultural world to which they belong. What we see here is a landscape made possible and reconfigured by a number of social facts that are like a set of nested cups: the largest "cup" is the enormous work of social movements and activists affecting legislative and institutional claims on citizenship in the U.S., which is the necessary but not sufficient explanation for how difference starts to be integrated. But our research is built from the recognition that this is only the starting point. People are born into cultural systems and families which first shape their primary sense of belonging and attachment, along with their growing awareness of their rights and responsibilities in the broader public sphere. We are aware of a class bias in this sample—suggesting something about who has access to the means of media production—but our broader data suggest that "new kinship imaginaries" are widely distributed across class and cultural lines, mirroring the equal opportunity nature of disability itself.

In the three clips embedded here, we see how different cultural repertoires are marshaled to construct new cultural narratives that accept and even valorize difference, and importantly, rewrite the cultural script for normative family life around familiar themes in American culture.

The first example, built around a therapeutic model of confession, recognition, and a new understanding of self, is made with Dana Buchman, a highly acclaimed upscale fashion designer who wrote a popular confessional book, entitled A Special Education, about what she learned from raising a daughter with serious learning disabilities. Much of the narrative draws on a discourse common to the American upper middle class. It is highly medicalized but also includes New Age elements. The acknowledgement that it is, "Okay to confess and let your feelings out," is very much a path-to-enlightenment story, but also in a very American way. Typical of the "cultural innovators" whom we are studying, Dana takes her newfound and hard won knowledge and becomes an activist with both the National Center for Learning Disabilities and an organization that she helped establish called Promise, which assists in providing neurological evaluations for underserved (poor) families in the NY area, as proper assessment is a huge obstacle for many families in their path to finding appropriate services for their children.[3]

The second example is the opening sequence from Escape Velocity (2006), an experimental digital animation that has done well on the festival circuit, made by the media artist Scott Ligon, coordinator for the digital foundation curriculum at the Cleveland Institute of Art and author of the book, Digital Art Revolution (2010).[4]

The film is autobiographical, and focuses on his Attention Deficit Disorder (ADD) diagnosis, one that he received belatedly, and which he resituates in a discourse of creativity, of having a brain that is "not typical." The narrative underscores how ADD is part of his family life; his wife and children also have ADD diagnoses. Using humor and witty graphics, Escape Velocity shows how certain everyday things can become very difficult (like remembering to take the suitcases for a family trip), but others—like emergencies—are taken in stride. Additionally, Ligon uses the film's visual and auditory effects to create a sense for the viewer of what it is like to live with ADD; for example, he layers the auditory track at one point so that it becomes difficult to distinguish signal from noise. In Escape Velocity, art uses science to explore boundaries that challenge everyday conventions. The characteristics assigned to ADD are portrayed as a source of creative energy and an unconventional life. Supporting this point of view, the film opens with a quote from Driven to Distraction, one of many books written by Dr. Ed Hallowell, a popular expert on ADD who was among the first to articulate this alternative view.[5]

Unexpectedly, we also found God in our research. We realize that we had failed to appreciate the complex differences that shape the ways that disability is understood in different religious traditions. For example, in the Jewish community, a Bar Mitzvah—which requires reading from the sacred Torah scroll—presents a special challenge to dyslexic children. As one of our informants, a Jewish day school teacher explained, in addressing the resistance of such places to incorporating LD kids: "It's in our tradition that education and religion are totally linked: if you can't read you can't pray." Happily, this is no longer entirely true as is exuberantly evident in a recent award-winning documentary, directed by Ilana Trachtman.[6] The film, Praying With Lior (2007), tells the story of a boy with Down Syndrome (DS), Lior Liebling, 13 years old at the time of filming, and his extraordinary family—and his capacity to pray.

In one of the most illuminating moments in the film, we see Lior boarding the bus for his Orthodox day school. His family is from a much more liberal wing of Judaism, Reconstructionism, but this yeshiva was able to find ways to incorporate Lior's difference which included a remarkable capacity for "davening" (prayer) with considerable success. We then see Lior in his classroom, learning and leading the "mincha" or the afternoon prayer, thought to be a space for spiritual contemplation in the day. Appropriately, the next scene offers us some examples of how his Orthodox classmates use their theological training to understand Lior, in an extraordinary display of religious creativity at an age when baseball is usually the top priority. They draw heavily on the Jewish concept of "kavanah" (Hebrew for intention): spiritual value has as much to do with the intention of the devotee as with its "outcome." As one of the boys says, "For Lior, because it is more difficult to learn to pray, 'it counts double.'". They also draw on the notion of divine mystery—that one cannot know what God's intention might be, and that all living beings, including the disabled , are created in God's image, part of a plan that we cannot know.

Conclusion

As these narratives make clear, families have the burden of mediating kinship with a difference. While the story of a Bar Mitzvah might seem far from the concerns of reproduction, Praying With Lior, along with many other media we have been studying, starts with the story of Lior's birth and diagnosis and the family's emergence from "the trauma of dashed expectations."[7] We argue that work on the politics of reproduction ignores this broader view at its peril; if we only focus on the immediate world surrounding assistive reproductive technologies, we are at risk of missing some of the fundamental ways in which issues of reproductive justice reverberate over the life course and through family systems, communities, and broader polities. Exploring the cultural consequences of the birth of children of disabilities has forced us to rethink the parameters of the niche of reproduction.

Unlike more overtly stratified relations of difference emerging out of the ordinary risks of reproduction, children with disabilities are largely unanticipated, and distributed across all kinship and class formations. Two generations ago, many such children would not have survived early infancy, while others might well have been institutionalized; some would have been barred from mainstream education because of prejudice, inaccessible schools, and rigid curricular approaches. In the contemporary United States, the integration of such children into their families, communities, and schools is central to the confluence of factors we are studying. These, in turn, now produce populations that demand and create a new social landscape on which the perceived "cultural epidemic in learning disabilities" is becoming visible. We cannot account for an important and democratic impulse toward inclusion and belonging of those with "All Kinds of Minds"[8] until the work of cultural activists—ranging from irate but resourceful family members to celebrity painters, from religious schools to bureaucracy-busting lawyers, from lab-based neuron-scientists to glamorous fashion designers (to name just a few of the many we have encountered)—is taken into account. These and other similar projects across many social domains are transforming a cultural—and especially a media—landscape, insisting that difference not be marginalized, making real-time claims on the inclusion of disability into the human community. Clearly, we need to get beyond the doors of hospital and clinics to truly understand the politics of reproduction in the contemporary.

Podcast

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Marginality and Exclusivity in ART Practices - Podcast Description
David Eng, Rayna Rapp, Faye Ginsburg and Michele Goodwin discuss "Marginality and Exclusivity in ART Practices" in this panel discussion moderated by Lesley Sharp. Increased demand for assisted reproductive technology (ART) and transnational adoption has been propelled by a number of factors, including the development of new technologies and changes in familial form - such as childrearing in second or third marriages; lesbian, gay, and transgendered families; and delays in childbearing and subsequent difficulties in conception - that make ART helpful. Other relevant factors include environmental changes that have negatively affected fertility levels, new levels of transnational migration and interaction that have fueled awareness of babies available for and in need of adoption, and concerns about genetic diseases and disabilities. Effectively, the various imperatives and the desires, both cultural and personal, that the use of ART fosters and responds to, have created a "baby business" that is largely unregulated and that raises a number of important social and ethical questions. Do these new technologies place women and children at risk? How should we respond ethically to the ability of these technologies to test for genetic illnesses? And how can we ensure that marginalized individuals, for example, people with disabilities, women of color, and low-income women, have equal access to these new technologies and adoption practices? And, similarly, how do we ensure that transnational surrogacy and adoption practices are not exploitative? These questions and many others on the global social, economic and political repercussions of these new forms of reproduction were the focus of this year's Scholar and Feminist Conference, "The Politics of Reproduction: New Technologies of Life," which took place on February 28, 2009 at Barnard College.

Endnotes

1. Faye Ginsburg, Lila Abu-Lughod, Brian Larkin, eds. Media Worlds: Anthropology on New Terrain (Berkeley: University of California Press, 2002). [Return to text]

2. Rayna Rapp and Faye Ginsburg, "Enabling Disability: Rewriting Kinship, Reimagining Citizenship," Public Culture 13.3 (2001): 533-556. [Return to text]

3. For more information on Promise, visit their website. [Return to text]

4. For more information on Scott Ligon, visit his website. [Return to text]

5. Dr. Hallowell's position is well summarized in the following quote from his website: "In my opinion, ADHD is a terrible term. As I see it, ADHD is neither a disorder, nor is there a deficit of attention. I see ADHD as a trait, not a disability. When it is managed properly, it can become a huge asset in one's life.... As I like to describe it, having ADD is like having a powerful race car for a brain, but with bicycle brakes. Treating ADD is like strengthening your brakes—so you start to win races in your life." [Return to text]

6. For more information, visit the film's website. [Return to text]

7. Gail Landsman, "Reconstructing Motherhood and Disability in the Age of 'Perfect' Babies: Mothers of Infants and Toddlers with Disabilities", Signs 24.1 (1998): 76. [Return to text]

8. Mel Levine, All Kinds of Minds: A Young Student's Book About Learning Abilities and Learning Disorders (Cambridge, MA.: Educators Publishing Service, 1992). [Return to text]