This is a review essay I wrote last semester for my American Studies seminar.
Haller, Beth A. Representing
Disability in an Ableist World: Essays on Mass Media. Louisville, KY: Advocado,
2010. Print.
Johnson, Mary. Make
Them Go Away: Clint Eastwood, Christopher Reeve and the Case Against Disability
Rights. Louisville: Advocado, 2003. Print.
Nielsen, Kim E. A Disability History
of the United States. Boston: Beacon, 2012. Print.
Relatively speaking, the field of
disability studies is quite new.
This is perhaps why the authors of the above books explain how they came
to disability studies, as if this path is rare enough to warrant an explanation. Their accounts, Haller’s and Nielsen’s
in particular, express a late developing and almost accidental interest in
disability studies. While there is
on average a book a day published on the Civil War, the entire field of
disability studies only produces a handful of books per year. This is all to say that at some point,
when far more disability studies books are published, the above three might not
be tied together in a review essay because their publication dates and subject
matter reflect quite a range. For
now, however, the overarching topic of disability is enough. In fact, for someone new to the field,
the range is beneficial. Broadly
speaking, Nielsen’s Disability History of
the United States sets the stage, giving context for all that follows, and
emphasizing the idea that while the academic discipline may be new, disability
issues are not. Nielsen ends with
the passing of the Americans with Disabilities Act, which is where Johnson
begins, crushing Nielsen’s optimistic ending with stories of discouraging and
infuriating legal, political, and attitudinal reactions to the law. Haller’s timeframe overlaps with
Nielsen, but her focus is on representation and her writing more scholarly. Johnson’s book is the strongest of the
three, though Haller’s and Nielsen’s are largely excellent as well. All three firmly endorse the social
model of disability, that is, the idea that the suffering disabled people
endure is a result of an oppressive society and not inherently because of a
disability itself. Together, these
books paint a fascinating, if frustrating, picture of how society has come to
approach disability.
Though
the subject matter A Disability History
of The United States is chronologically the first of these books, it is the
most recent (published only two months ago). Perhaps that is why this book, far more than the other two,
has a constant focus on how disability intersects with race, class, sexual
orientation, and gender. Nielsen
argues that “the concept of disability is at the core of American citizenship,
contested explorations of rights, racial and gender hierarchies, concepts of
sexual deviance, economic inequalities, and the process of industrialization,” and
contends that a story of US history that ignores disability is incomplete (182).
Using historical documents and reinterpreting well-known narratives in a
disability context, Nielsen claims that “the power to define bodies as disabled
has given justification, throughout US history, for subjugation and oppression”
(182). Essentially, assigning
morality to bodies has been and continues to be at the root of injustice.
One of the starkest examples Nielsen
gives of ableism intertwining with other forms of oppression is slavery. “The racist ideology of slavery held
that Africans brought to North America were by definition disabled,” Nielsen
writes, continuing, “Slaveholders and apologists for slavery used Africans’
supposed inherent mental and physical inferiority, their supposed abnormal and
abhorrent bodies, to legitimize slavery” (42). Picking up on this thread later, Nielsen notes the number of
insanity diagnosis among former slaves.
She quotes Civil War era physician Peter Bryce, who argued that freedom for
former slaves removed “the restraining influences which had been such
conservators of healthfulness for mind and body” (91). Doctors like Bryce, whose authority
positions and prejudices combine to actively harm those considered disabled,
appear repeatedly throughout the book.
Despite these reoccurring circumstances, Nielsen’s general narrative is
one of progression, and justifiably so – circumstances for disabled people have
improved on the whole. Yet, in a
present when mental health diagnoses are much higher among people of color and
doctors are still the gatekeepers of diagnostic validation, she could have
stood to make connections to current circumstances more explicit.
Enter Mary Johnson. One need only read the first page of Make Them Go Away to understand that the
disability rights struggle is far from over. The two authors’ different approaches come into focus here:
while Nielsen is surveying 200-plus years of history, Johnson is focused on one
decade. Nielsen devotes a few
paragraphs to the ADA and its aftermath (including the mention of an amendments
bill that was passed in 2008, five years after Johnson’s book was released),
while Johnson writes a whole book.
In the broader context of American history, the ADA is a tremendous
achievement, but Johnson does the important work of scrutinizing that
achievement and its implications. Her
book contains two main sections: The Case Against Disability Rights and The
Case For Disability Rights (a third section, Continuation, examines where
disability justice stood at the time of writing). Johnson, in examining reactions to the Americans with
Disabilities Act in the decade following its passage, argues that the
widespread refusal to see disability through the framework of rights has been
the cause of overwhelming discrimination against disabled people.
Johnson begins by explaining the context
in which the ADA was passed.
Unlike other landmark civil rights legislation, she notes, there was not
much of a public discussion around disabled people and disability (XII). Therefore, although a law was passed
guaranteeing protection against discrimination on the basis of disability, the
majority of people still felt that “disabled people faced essentially private,
medical problems rather than problems of discrimination” (XIII). Significantly, liberals, prone to
fighting for civil rights, agreed with the majority view that “rights was
simply the wrong lens through which to view the disability situation” (XIII). Johnson, a renowned journalist in
disability circles for founding and editing The Disability Rag and Ragged Edge,
drives this point home in part by repeatedly quoting the New York Times’s ableistic news coverage and Op-Ed page. She describes some of the legal
implications of the ADA, noting that without an enforcement agency, the law
requires lawsuits to bring non-compliant businesses up to ADA standards, which
puts disabled people in the position of constantly having to choose whether to just
not enter certain spaces or to sue and be labeled a whining cripple.
In the first section of the book, Johnson
lays out the case against disability rights in the 1990s, which manifested in
fights against the ADA and was spearheaded by right-wing think tanks. Her strategy is effective: she
establishes patterns in the disability rights opponents’ arguments and then
repeatedly quotes think tank papers and newspaper columns that use these
frameworks. The common arguments
include “We’ll give them their special toilet, bus, courtroom, housing complex
– just don’t expect us to change the real world for them” and “They are hurting
us,” an argument premised on the false notion that there is a strict line
between able-bodied and disabled and the mistaken belief that disabled people
are a small group (31-3). Johnson
also notes that cost is a constant issue for those against disability
rights. “Nobody seems ashamed to
say full access is going too far—like the might if the issue were race or
gender—because with access, money has to be expended,” she writes, continuing,
“The complaint about cost is not about cost as much as it is about the fact
that the cost is being expended for them,
a tiny group of complainers” (35).
Her final, and perhaps most powerful observation is the constant
qualifying statement made by ableists: “No one is against the
handicapped.” She writes,
“No
one is against the handicapped” is why disability rights has had so little
hearing in this country. The
phrase says there is no animus
against disabled people – even though they are segregated and kept from full
access to society, even though the special programs society affords them makes
for a much more circumscribed life – far more circumscribed than what any
nondisabled citizen would settle for.
The purpose of the phrase is to stifle dissent, although it is doubtful
those who use the phrase so unthinkingly are fully aware of what they are doing
(44).
Throughout
the book, this rule proves true, as Johnson quotes endless op-ed pieces that
begin with some variation on “No one is against the handicapped” and then
proceed to propose the decimation of disability rights.
As
Johnson attests, these strategies were highly successful, in part because there
were very few people arguing back.
“It is true that the organized disability rights movement ignored the
media,” she writes, “Its leaders felt they had good reason. Most stories about disability were
inspirational features about disabled people who had overcome personal
affliction with a smile and a bundle of courage,” an image that perpetuated a
harmful idea of what it was like to be disabled (XII). Though further investigations into this
topic are out of Johnson’s scope of inquiry, they are right in the middle of
Beth A. Haller’s focus. A
Professor at Towson University, Haller’s Representing
Disability in an Ableist World investigates both the problematic portrayals
of disability in the mainstream media and the recent trend in online disability
activism that is beginning to make slight headway in combating it. Haller argues that the media discourses
surrounding disability both prove and perpetuate the widespread and often
unquestioned presence of ableism in society. In an especially relevant quote, Bad Cripple blogger William
Peace explains, “My experience with mainstream media has been overwhelmingly
negative. The message the
mainstream media wants to present is you’re either a hero or a lazy shit and
there is no in between” (3). As
Haller demonstrates, this dichotomy of inspirational and evil is inescapable in
modern media.
Haller’s approach is straightforward and
effective: a series of essays that use case studies to analyze the
representations of disabled people in different media genres. Haller lays out her methodology in the
second essay, titled “Researching Media Images of Disability,” where she
describes her work as “content analysis.”
The essays themselves are arranged in a curious order – she starts
optimistically and then backtracks to spend most of the book talking about the
terrible media representations of disabled people. Despite this, the essays are quite interesting. Unlike Johnson, who has a distracting penchant
for repeating anecdotes, Haller writes essays that are mostly standalone. Though she does far more quantitative
analysis than Johnson, they share the framing device of laying out common
narratives surrounding disability and then supporting their claims with news
stories.
Haller’s essay on The New York Times coverage of assisted suicide is a particularly
interesting piece, both on its own and when considered along Johnson’s and
Nielsen’s books. Examining Times articles on assisted suicide in
the 1990s and 00s, Haller notes several troubling trends, chief among them “a
particularly heinous narrative frame presents disabled people as ‘better off
dead’ because of their perceived inferiority to able-bodied people” (67). Diane Coleman, the leader of activist
group Not Dead Yet, is quoted as saying that “[A]s a policy, it [assisted
suicide] singles out ill and disabled people as fitting subjects for
dying. Meanwhile, neither the
public nor health professionals endorse this so-called ‘autonomous’ decision
for young, healthy Americans” (69).
Haller notes that those who choose assisted suicide are quoted in news
articles, while the perspectives of disability rights groups such as Not Dead
Yet are rarely included, an observation that corresponds with Johnson’s
analysis of the one-sided nature of disability articles (though Haller chalks this
up to a failure of the media to reach out to disability organizations, rather
than, as Johnson claims, disability rights groups avoiding the media because of
a history of damaging representations).
Haller further argues that people who claim to want to die are often
pressured into such decisions, and references a theory of Johnson’s that
disabled people who chose assisted suicide are often victims of internalized
prejudice. While Haller’s tone is
more scholarly that Johnson’s, their conclusions about the media’s approach to
disability issues are quite similar.
Neilsen’s book, meanwhile, covers what Haller argues is the pre-cursor
to assisted suicide: eugenics. “We
see evidence of this narrative frame [of ‘better off dead’] in historical
coverage of the forerunners of assisted suicide: eugenics and euthanasia,”
Haller writes (69), as Neilsen explains, “In law, in popular culture, in
science, and even at local county fairs, eugenics was pervasive in the United
States in the late nineteenth and early twentieth centuries” (101). She quotes prominent doctors and judges
who pushed for sterilization as a way to guarantee “the destiny of the American
nation,” and rid the United States of an economic burden (102). These ideas come back in Haller’s
essay, when she mentions scholar Wesley Smith’s fear that “in an
economics-driven medical climate, the message may be that [disabled people] are
too ‘costly’ too keep alive” (70).
Finally, all three authors are interested
in how language and attempts to define disability have evolved. Neilsen begins her book with describing
Indigenous attitudes toward disability, which she then contrasts with the viewpoints
of the European settlers. She
writes that in many Indigenous communities, “though individuals might
experience impairment, disability would come only if or when a person was
removed from or unable to participate in community reciprocity… a young man
with a cognitive impairment might be an excellent water carrier… His
limitations shaped his contributions, but that was true of everyone else in the
community as well” (3). The
Europeans, however, perceived disability quite differently. “Within the early capitalist systems
beginning to dominate Europe,” Nielsen writes, “the primary definition of
disability was an inability to perform labor” (20). Capitalism, with its emphasis on a normalized body, proved
disastrous for disabled people, both by devaluing their contributions and by
creating strict divisions between disabled and able-bodied people through a
need to categorize people. Today,
Haller and Johnson assert, disability has become medicalized. “Disability is seen as a physical
problem alone, residing with individuals,” Haller writes, citing disability
studies scholar Richard Scotch (68).
Johnson argues that such a definition takes the impetuous for the
betterment of the lives of disabled people away from society and places the
responsibility on disabled people’s shoulders, thus creating space for the
rhetoric of self-victimization and laziness that surround the lives of those
with disabilities. Johnson notes
that one of the failures of ADA implementation was that courtroom arguments mainly
centered around whether a person qualified as disabled, which went directly
against the original spirit of the law.
But, as Make Them Go Away’s
epigraph reads, “A law cannot guarantee what a culture will not give.”
By and large, these books are not
optimistic. Unfortunately, though
disability rights groups have accomplished victories over the years, disability
is still stigmatized and widely misunderstood. One need only look to earlier this week, when the Senate
failed to ratify the Convention on the Rights of Persons with Disabilities, a
largely symbolic UN treaty, to see that the movement has a ways to go. (News coverage, it should be noted,
followed the patterns laid out by Johnson and Haller – next to none before it
was struck down, and the articles written in the aftermath focused on the
extreme nature of right wing Republicans and not on big picture disability
conversations. Senators who
advocated for the treaty were quoted in their disappointment; disability rights
organizations were not.) And yet,
Beth Haller’s observations about the power of the internet as a place for
disability advocacy are even more true today than they were two years ago when
her book was published. Disability
studies programs continue to spring up across the country. The anger in Johnson’s book, the
claiming of US history as disability history in Nielsen’s, and the measured but
absolute take-down of media portrayals of disability in Haller’s indicate that
there is energy and confidence in the fight for disability rights. The advocacy and the scholarship are
intertwined at the moment.
Presumably, and hopefully, they will continue to feed each other.
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