The Stigma of Disability: Autism

The Stigma of Disability: Autism

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Goffman’s ahistorical analysis of stigma focused on individuals living in contexts where stigma’s existence is presumed and must be managed. 

• He placed the burden of management on discredited individuals who need to hide or mitigate the public exposure of their stigmatizing conditions. 
• Almost all of us, he says, will at some point in time be devalued, if not because we have some discrediting attribute, then because we have social connections to someone who does

History tells us that stigma—a culturally specific concept—is highly variable across time and place. 

• It does not derive solely from ignorance or an individual’s failure to navigate the psychological machinations of the presentation of self in everyday life.
• Mental illnesses became stigmatized as this label was increasingly deployed as a modern category for the idle, particularly as capitalism developed. 
• Doctors, politicians, and other “experts” on public health isolated people they deemed economically unproductive. 
• Over the past three centuries, neither awareness nor medical and scientific advances have greatly affected the ebb and flow of the stigma of the many conditions classified under the rubric of mental illness, whether explained via conventional psychosocial and psychoanalytic frames or the more recent neurobiological models 
• Just as ignorance is not wholly to blame for stigma, neither does scientific knowledge erase it. 
• Stigma comes from deep structural conditions, such as capitalism, ideologies of individualism and personal responsibility, and the complicated legacies of racism and colonialism. 
• Our dynamic conceptions of mental illness ride on the waves of broader cultural changes, and when science or medicine does ameliorate the shame of suffering, it does so as the "servant" of culture.

• Moral judgments about “mental illnesses” reflect what, at certain times and places, people consider the ideal society and person. The same holds true for physical disabilities when communities perceive them as violations of a properly ordered life (Murphy 1987:29) or as “nature’s mistakes” (Bogdan 1988:6). 
• The most stigmatized people tend to be those who do not conform to the ideal modern worker: the autonomous, self-reliant, individual - the burden of stigma changes along with the ideals of the modern worker.
• Redefining the modern worker through "accommodation"
• • Popular representations of contemporary autistic persons suggest that young adults with autism can succeed in the workplace not despite their differences, such as restricted interests in technology and numbers, but because of them. 
  • They might enjoy repetitive administrative and technical tasks that neurotypical others eschew, such as filing, inventory management, and animal care. 
  • Such flexibility in assessing social and economic worth has made it possible for people who self-identify as autistic, to celebrate forms of difference that were once disdained and hidden; they can become valued and visible parts of economic and community life to a degree that was previously impossible.
  • Yet, more flexible kinds of work schedules make it possible for people with physical and mental disabilities to work, resisting norms that prevent them from becoming integral parts of a community.
• Old categorizations
• In the 1960s and 1970s, children with autism were often diagnosed with childhood schizophrenia or mental retardation, and schools and employers offered few opportunities. 
• With no evidence to back up their accusations, clinicians commonly blamed autism on supposedly unloving “refrigerator mothers” (Bettelheim 1972) and conceived of autism in the framework of psychotic disorders (Tustin 1995). 
• In that context, few parents wanted to disclose that they had a child with autism
• Changing Ideas about identity
• diverse forms of personhood are generally more accepted and considered less threatening today, despite the persistence and resurgence of bigotry, racism, anti-Semitism, and discriminatory immigration reforms throughout the world.
• transgender
• fluid sexualities
• neurodivergents
• mental health fields are shifting from contained diagnostic categories, in which one has this disease or does not, to a dimensional view; nearly all disorders are now considered to be distributed differentially across the population - SPECTRUM DISORDERS
• In this new model, clinicians ideally pay more attention to describing the severity of a patient’s various symptoms than to assessing whether a patient meets every criterion for a specific disorder.
• The contemporary term for normal that comes from the neurodiversity movement, “neurotypical,” does not really mean normal. It refers, critically, to people who conform to society’s definition of the normal.

• Historical and Institutional Forces and Stigma
• psychological impairments acquired new meanings under capitalism
• only during the first industrial revolution did the person addicted to alcohol become an alcoholic, the person who hears voices become a schizophrenic, and so on. 
• Before psychiatry began as a discipline in the late eighteenth century, mental illness was not a category distinct from physical illness (Foucault 1998 [1965]; Hacking 2004). 
• Mental illness—the notion of a distinct group of abnormalities of thought and behavior—is a distinctly modern invention, appearing in Europe and the African colonies in the early nineteenth century, and then in East Asia by the late nineteenth century, as the result of European influence. 
• The history of mental illness, including the growth of horrific asylums, illustrates the vital role classification played in the simultaneous emergence of mental illness and stigma.
• Far before the invention of psychiatry, asylums contained people defined not in terms of their individuality but through their “unreasonable” relationship to work and to the economy in the city.
• lumped together as one because they were considered to have one thing in common: lack of reason.
• The market prompted the abandonment of long-established techniques for coping with the poor and troublesome (finding places for them in society) including troublesome members of the more affluent classes
• The asylum was not a hospital for treating illness but a separate world of discipline in which administrators used whatever tools they needed—chains, stakes, cages, for example—to subdue and control the “unreasonable” and, to some extent, inhuman, since reason was considered the essence of humanity. 
• “the ultimate indicator of a lobotomy’s success was its ability to return patients to gainful employment”. Today, the World Health Organization still includes “productive” work in its definition of mental health - emphasizing the role of capitalism in framing mental illness.
• Mental Illness and Categorization
• But by 1800, scientists divided men and women into incommensurable, fixed categories, a categorization that was essential for social order in an increasingly industrialized Europe.
• The invention of the female was part of the same process of modern classification as was mental illness. 
• In both France and England, scientists now saw women as defined by their bodies, as beings tied more closely to nature than men. 
• Describing the stigma of being female in the early nineteenth century, one historian notes, “In moral discourse there was hardly any overlap between the active, rational, resolute male and the emotional, nurturing, malleable female. The two sexes were essentialized, and woman was constructed as ‘other’ in a more absolute sense than ever before” 
• This separation made it even easier for experts to fix stereotypes of femaleness, including a tendency to equate women with mental illness. 
• It was just a short step to associating mental illness with women through the “nature” of their sex, a development that led to the creation of hysteria as a mental illness category, as well as the development of a pathological model of human sexuality.
• By contrast, during World War I, instead of using the stigmatizing term “hysteria” for officers suffering emotional or unexplained bodily distress, British physicians used the less stigmatizing term “shell shock,” whether the soldier saw combat or not. The term denoted an appropriate, understandable male response to stress, rather than anything inherent in the individual.
• By 1973 gay rights and veterans’ rights leaders, along with ex-patients and young, progressive psychiatrists, were able to persuade the American Psychiatric Association to remove homosexuality from its list of mental disorders and to begin serious consideration of a new concept of post-traumatic stress disorder But with the exception of those two groups—homosexuals and veterans—the so-called mentally ill were still relatively silenced. 
• The point is not that children and adults are being over-diagnosed and over-treated—that is a subjective judgment open to a range of interpretations—but that a particular diagnosis became embedded in a financial system that has come to depend on that diagnosis for its sustainability and growth. 
• • this explains why there is an explosion of diagnoses in some areas (ADHD and Autism).
  • Given the absence of any medical intervention, autism is a dream frontier for the pharmaceutical industry.
  • numerous classifications that parents have found uncomfortable if not stigmatizing, such as intellectual disability and specific learning disability, declined as autism became a more common, less frightening, and less shameful diagnosis. 
  • The expansion of autism into a spectrum, the decline of mother blame, and the temporary inclusion in the DSM of Asperger’s Disorder as a way to describe people with autism who were intelligent and educable (1994–2013) all reduced stigma and made autism increasingly desirable as a replacement for other diagnoses, especially for children with identifiable genetic syndromes in which autistic features were one part of the syndrome.
  • Fiscal incentives and disincentives play an important role in the number of school diagnoses of autism: the more diagnoses, the more money the school receives (Sigafoos et al. 2010).
  • On the flip side, autism rates fell when those resources were removed (Kwak 2010). Parents fighting for autism-related services often find themselves in a legal quagmire, depending on the availability of support in their districts.
• WORK AS VALUE
• Sunaura Taylor offers a critique of "work" being the hallmark of independence for the disabled. In her 2004 essay “The Right Not to Work: Power and Disability.” She writes:
• "The fact is that impairment reveals our interdependence and threatens our belief in our own autonomy. And this is where we return to work: the ultimate sign of an individual’s independence. For many disabled people employment is unattainable. We often simply make inefficient workers, and inefficient is the antithesis of what a good worker should be. For this reason, we are discriminated against by employers. We require what may be pricey adaptations and priceless understanding. Western culture has a very limited idea of what being useful to society is. … Disabled people have to find meaning in other aspects of their lives and this meaning is threatening to our culture’s value system. … The same rule that often excludes the impaired from the traditional workplace also exploits the able-bodied who have no other choice but to participate. The right not to work is an ideal worthy of the impaired and able-bodied alike".

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