The Difference that Disability Makes: Reproductive Justice Through a Wider Lens
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.
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