Autism as Bare Life

Majia Holmer Nadesan

Goals

 This paper examines the biopolitical and

socio-economic implications of framing
autism as an inborn and typically genetically
linked disorder by focusing on two separate,
but inter-related, issues:
 autism susceptibility testing and
 public funding for medical and educational
programs for children with disabilities.
Organization of Presentation
 Examine How We Think About Autism
Scientifically: 2 Approaches
 The Pessimism of the Genetic Brain
Damaged Formulation
 What is Driving this Pessimistic Formulation $
$$$
 Autism as Bare Life
 Autism in the Context of Disaster Capitalism
and Economic Austerity
Thinking About Autism
Scientifically
 Martha Herbert (2005) distinguishes between 2
distinct approaches to the science of autism
genetics:
 1 autism as a strongly genetic, “brain based” disorder
(italics added, p. 355)
 2 autism as a “systemic” disorder conferred by genetic
susceptibility, but extensively modulated by, and
responsive to, environmental phenomena.
 Although both approaches view autism within
“genetic” frameworks, the systemic approach
stresses contingency and openness, while the brain-
based approach tends to view autistic brains as
irreparably damaged.
Genetic Approach: Pessimism Toward
Treatment
 Within the genetic variant, damaged, faulty, or
divergent gene alleles produce irreparably damaged
“autistic” brains (Nadesan, 2005).
 Damaged brains are believed to be the source of
the wide repertoire of autistic behaviors and
deficiencies.
 Therapeutic interventions are believed to have
limited impact in repairing or compensating for brain-
based deficiencies.
 Treatment emphasizes pharmacological
management, rather than treatment of, autistic
symptoms.
 What’s Driving the Pessimistic
Formulation?
 Genes have become transformed into commodities,
shaping research trajectories and problem-solution
frames (Nelkin, 2001, p. 558; Rose, 2008).
 Autism susceptibility genes are biocapital.
 The World Intellectual Property Organization recognizes
patents on at least two autism susceptibility genes
(Application No. PCT/1B2005/002630 and Application No
PCT/1B2005/002319).
 The U.S. Patent office has patented a method for screening
genetic markers associated with autism (Application No.
95117 filed in 1998).
What’s Driving the Pessimistic
Formulation?
 Genes are viewed as risk-laden, as opposed to
environments within the pessimistic formulation
 This formulation is economically useful within the
anti-regulatory US wherein EPA and FDA regulatory
frameworks are written by revolving door industry
insiders
 The Children’s Environmental Health Center at
Mount Sinai reports that only 20 % of the more than
80,000 new chemicals produced since World War II
have been tested for toxicity to children (Kristof,
2009).
TSCA versus REACH
 In August of 2007 the U.S. Government Accounting Office (GAO)
published a report comparing the lax U.S. regulatory framework
for chemicals with a recently enacted European framework,
REACH. The GAO report, titled, “Chemical Regulation:
Comparison of U.S. and Recently Enacted European Union
Approaches to Protect against the Risks of Toxic Chemicals” (
GAO-07-825), explains that under the current regulatory system
in the U.S., companies do not have to develop information on the
health or environmental impact of chemicals unless specifically
required by EPA ruling. Consequently, the EPA relies on
voluntary programs for gathering information from chemical
companies in order to evaluate and regulate chemicals under the
provisions of TSCA. The GAO report found TSCA inadequate in
comparison with REACH’s reporting requirements.
Risk Shifts to Genes, Not Environments
 By shifting our focus from
environment to [mechanistic]
genes, the marketization of
autism genes absolves the state
of regulatory responsibility for
monitoring and governing those
diverse contaminants known also
to confer risk and susceptibility to
development disorders, such as
lead, mercury, etc. Genes are
viewed as risk-laden, as
opposed to environments.
Pessimistic Formulations &
Autism as Bare Life
 Autism susceptibility tests may produce a “thanatopolitics”—a
politics of death--for autism.
 Pre-natal autism tests have the potential to reduce life from bios
—the life proper to an individual within a polity—to zöe, or bare
life that can be killed with impunity (see Agamben, 1998; Murray,
2008).
 What is being problematized here is the deliberate
discarding of a particular form of life because of its
designation by technical instrumentation as autistic. The
decision to abort an autistic fetus stems from a perception
of irreparable damage done to the fetal brain by deficient or
damaged genes, or by other physiological events/processes
Autism Genocide?

 For example, there exists online an Autism

Genocide Clock that purports to countdown
years, days, and minutes to the seeming
inevitable development of an autism prenatal
test (see http://ventura33.com/clock/).
Disaster Capitalism and Austerity

 Why would parents choose to abort

fetuses designated with autism
susceptibility?
 The mere existence of technologies of pre-
natal testing may responsibilize parents for
choosing children in the context of
increasingly “austere” social supports.
 Choosing autistic children is itself risky under
“disaster capitalism” (see Naomi Klein)
Crisis Capitalism in America

 Middle-Class America is in crisis.

 Public programs for people experiencing
poverty, disability, and age-related needs are
being cut dramatically
 Public school funding is being decimated,
leading to crowded classrooms and even less
support for kids with disabilities
America’s Poor & Uninsured Grow
US Poverty Rate at 14.3% or 1 in 7

 The data show that the poverty rate

increased from 13.2% in 2008 to 14.3% in
2009, the highest rate since 1994.
Furthermore, for the first time on record, the
nominal (non-inflation adjusted) income of the
median, or typical, household actually fell,
from $50,303 in 2008 to $49,777 in 2009.
(EPI, 2010)
US Poverty Rate is Very High for People
in Child Bearing Years

 Poverty Rate 42.8% for 2

5-to-34-Year Olds
(Dougherty & Murray,
2010).
Public Funds Slashed for People with
Disabilities
 The Center on Budget and Policy Priorities reported
in May of 2010 that at least 30 states have cut
funding for low-income families eligible for
health insurance or care, at least 25 states are
cutting programs for the elderly and disabled
(Johnson, Oliff, & Williams, 2010). Efforts to halt
budget cuts to people with disabilities using
injunctions have not been successful in states such
as Arizona (http://
www.acdl.com/legalpolicynews.html).
Educational Funding Slashed
 The Wall Street Journal reported that 75 percent of
California’s elementary schools will increase class
size in 2010 (Tuna, 2010). Likewise, Georgia school
districts are facing $700 million in cuts, leading state
lawmakers to consider temporarily waiving state-
mandated class-size limits
 The National Conference of State Legislatures
predicts that schools funding will, metaphorically,
drop “off a cliff” when the American Recovery and
Reinvestment Act (i.e., the stimulus) funds expire.
State Budgets in Crisis

 State budget shortfalls anticipated for 2011

are expected to total approximately $121
billion and will be greater than the 2010 and
2009 shortfalls (Center for Budget and Policy
Priorities, 2010).
Neoliberalism and Disaster
Capitalism
 The unwillingness of the federal government to backstop cuts in
social services for vulnerable populations by strapped states
illustrates the logic and effects of austerity.
 Disasters prove opportune times for neoliberal authorities and
various other “reformers” to downsize social-welfare programs
and services (Klein, 2007).
 Austerity measures typically target vulnerable populations
lacking the resources to lobby against them (Nadesan, 2008b).
 Austerity measures are often accompanied by the circulation of
neoliberal cultural discourses that responsibilize individuals,
while delegitimizing the logic of social-welfare (Nadesan, 2008a,
2010).
Randian Amorality, Disaster Capitalism,
and Austerity
 Neoliberalism dovetails smoothly with the amorality
of Randian narcissism. Indeed, Ayn Rand’s
philosophy, marked by intolerance for anything less
than perfect human autonomy, captured the
imagination and loyalty of the long-term Federal
Reserve Chairman Alan Greenspan (Taibbi, 2010)
 The fusion of neoliberal market valorization and
Randian intolerance and arrogance enabled and
legitimized the plundering of the wider population
and the systematic dismantling of Keynesian social-
welfare equalization and re-distribution systems.
 Children, the poor, the aged, the ill, and those with
disabilities will be discarded within this regime
Discarding of Life? There is Clear
Evidence…
 This industry bias is evident in the
U.S. EPA and FDA management of
the Gulf Oil Disaster. The
government approved use of 1.84
million gallons of dispersants and
the cover-up (literally) of toxic levels
of oil at popular beaches.
 In an interview with Democracy
Now, EPA whistleblower Hugh
Kaufman accused the EPA of
deliberately hiding corexit dangers
Autism, Austerity
and Disaster Capitalism
 All people with disabilities
and vulnerabilities face
peril in the disaster
capitalism
 The marginalization and
discarding of vulnerable life
is a kind of thanatopolitics,
a politics of death that must
be met with a resistance
biopolitics of vital life
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