Faye Ginsburg and Rayna Rapp, "The Difference that Disability Makes: Reproductive Justice Through a Wider Lens"
(page 4 of 5)

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.

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