Article Highlight: Vol. 41, Issue 1, “‘I Don’t Have Time for an Emotional Life’: Marginalization, Dependency and Melancholic Suspension in Disability”

This week on the blog we are highlighting Brian Watermeyer’s article “I Don’t Have Time for an Emotional Life”: Marginalization, Dependency and Melancholic Suspension in Disability. Watermeyer provides an introduction to key aspects of the social and economic marginalization of the disability minority experienced globally. He then explores and compares the complex debates surrounding materialist and psychological approaches and accounts of racism and disablism, particularly with reference to the place of grief and loss in disability discourse. Finally, Watermeyer considers how Cheng’s engagement with racial melancholia may help illuminate how disability inequality, like that of race, may remain a stubborn reality.

Watermeyer begins by discussing some theoretical orientations of social inequality. In the discipline of disability studies, it is a historical materialist (Marxian) approach which has dominated, with particular attention to psychological aspects of disability oppression. Disablism can be defined as discrimination based on physical, sensory, cognitive, or psychiatric impairment. Combined with critical and liberatory theory of racial inequalities, Watermeyer states it is reasonable to assume that living in the face of discrimination and marginalization will create feelings of grief, withdrawal, and suffering, as harms are sustained at both the physical and psychological levels.

In her book, The Melancholy of Race: Psychoanalysis, Assimilation and Hidden Grief, Ann Cheng (2000) presents a psychological model of racial inequality with loss at its center. For Cheng, racial inequality persists within the United States because it forbids grief. The larger, societal demand for every individual to strive for an ideal cultural whiteness continually pulls individuals away from an emotional center, creating ambivalence, a lack of self-empathy, and distortions of ideology.

Building off of Cheng’s argument, Watermeyer discusses the shared characteristics of racism and disablism. Prejudice and stigma are the ever-present companions of structural inequalities for both forms of disparity. Disabled people, especially those in low income countries, are the most vulnerable of the vulnerable, as most societies are designed with only the needs of the non-disabled majority in mind. There are formidable barriers to housing, transportation, and freedom of movement, as well as exclusion or segregation in education and other public accommodations.

Additionally, Watermeyer states the cultural embeddedness of making sense of disability via a “medical model” has reinforced the marginal position of disabled people. In this institutional view, social disadvantage is understood as a simple consequence of bodily difference or dysfunction, portraying disabled people as “damaged invalids” who are unable to contribute in community life. This view negates any consideration of discrimination’s role in inequality.

While the historical materialist view recognizes the role of biomedicine in justifying the marginalization of disabled people, it is the quantifiable, visible reality of exclusion from the workplace, and other “barriers to participation,” as its primary focus. Yet Watermeyer recognizes the analysis of oppression should not just be in the public, institutional spheres, but should also include private domains. Social exhaustion and scarcity have a psychological component, and it is important to understand the ways in which ongoing assaults on identity limit the imaging of different social organization.

For Watermeyer, there are several problems with describing feelings of damage and tragedy as arising from both congenital and adventitious impairment, with little or no attention to structural or contextual factors. This viewpoint positions impairment of the body as the central disadvantage faced by disabled people, ignoring injustices such as discrimination and rejection. Further, attaching narratives of tragedy to disabled people has been loudly rejected by the international disability movement. According to Kleinman, Das, and Lock (1997), if there is loss or grief in the lives of disabled people, it has to do with social suffering, not bodily “flaws.”

While discussing oppression and melancholia, Watermeyer describes an encounter with “J,” a male psychotherapy client living with tetraplegia (paralysis of the lower limbs and partial paralysis of the upper). A South African man in his mid-twenties, J lived a life of profound structural exclusion, unemployment, physical dependency, a poor social network, and imprisonment in his mother’s residence by poverty and poor public transportation. In his limited engagements with the world, indications that he was “broken” were commonplace.

When questioned about his emotional experience of these circumstances, J’s reply was, “I don’t have time for an emotional life.” At the subjective level, being trapped in an immovable system of structural exclusion meant being equally controlled by an “emotional economy,” with its own rules on what could be felt, loved, hated, or hoped for. In J’s life, these constraints appeared to limit emotional freedom as definitively as unreachable buses limited his movement. Emotional care, guilt, and limited space were the constant followers of his physical dependency, transferring feelings of sadness, frustration, or rage to unconsciousness. Simply, “not having time for an emotional life” meant not having the resources to overcome prohibitions on feelings and expressions of grief.

Melancholic systems deal with difference by maintaining existing racialized and discriminatory structures. This disjuncture produces a detrimental position involving both alienation from one’s emotional self, and experiences in the social world which repeatedly point to one’s failure to assume the ideals which secure real belonging. Watermeyer states that dominant culture presents disabled people with a paradox: while reaffirming the message that the disabled figure is dismal and broken, the world demands that he or she not grieve, as this would be a submission to the passivity, pessimism, and invalid status that pervade the disabled stereotype. As in the case of race, the ruling is “prove to me that you are not what I know you to be.”

Watermeyer’s perspective reframes lives of disabled people as basic to the universal human condition. The stereotype which attaches loss simplistically to impairment is rejected, and replaced by a more nuanced picture of struggle relating to discrimination, structural exclusion, pain, fatigue, and the host of everyday miseries that punctuate any human life.


References Cited:

Cheng, Ann A. (2000) The Melancholy of Race: Psychoanalysis, Assimilation, and Hidden Grief. Berkley: Oxford University Press.

Kleinman, A., V. Das, and M. Lock. (1997) Social Suffering. Berkeley: University of California Press.

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Autism in Brazil and Italy: Two Cases From the June 2015 Special Issue

Our July 2015 entries on the blog highlighted individual articles from our latest release, the June 2015 Special Issue on the conceptualization of autism (which you can access here.) These articles, focused centrally on anthropological and ethnographic accounts of autism across the world, explore contemporary issues surrounding identity, subjectivity, citizenship, biosociality, neurodiversity, and disability. In this week’s installment, we visit two more articles from the issue to investigate concepts of autism and its treatment in two countries: Brazil and Italy.


Autism in Italy: Rigidity and the Culture of Therapy

Read the full article by M. Ariel Cascio here: http://link.springer.com/article/10.1007/s11013-015-9439-6

In Italy, therapy and educational professionals who work with young adults with autism (ages 14-34) note that autism is often marked by a desire for intense social structure and timeliness: what they describe as “rigidity” or “rigid mind.” While the desire for structure is considered a core feature of the autism diagnosis across the world, Italian professionals who serve in community-based therapy, day centers, and residential homes for people with autism nevertheless have a complex relationship with “rigidity” as a mechanism for treatment.

Cascio interviewed both staff members at centers and programs for young people with autism as well as mental health and social service professionals throughout the region who worked on autism across the life course. These professionals voiced the value in creating structure for people with autism to assist in their development of improved social skills. Therapeutic centers and programs are themselves operated within an institutional structure that facilitates organized social interactions, both between their clients with autism and amongst staff members. However, professionals who worked at these programs often felt stymied by expectations from parents and their peers who wished for children with autism to adhere to a particular therapeutic regimen, diet, or activity schedule. The professionals likewise cautioned one another that taking any staunch, singular, and indeed “rigid” route to therapeutic intervention could prove counterintuitive to helping people with autism develop new social skills. Professionals embraced the idea of providing structure while, simultaneously, seeking to blend behavioral therapies to match individual client needs, as well as to create opportunities for clients to engage in valuable, less structured social activity.

These concerns about rigidity in the treatment of autism arrive at a time when older social structures for the care of neurodiverse individuals have been disassembled. In the 1970s, new social movements led to the deinstitutionalization of mental hospitals and care facilities, replacing the separation of mentally ill and neurodiverse individuals with integration policies that mandated new employment opportunities and equal-opportunity education for the developmentally disabled. Local mental health services attached to the national health care system provide psychiatric, behavioral, and therapeutic services that accompany other integration policies. This state of flux, at the societal level, refutes the notion that social services for autism must remain “rigid” and immmovable: they, too, change and develop with time given broader changes in the resources and services made available by the state to the disabled.

The Italian case presents a unique perspective on both the relationship between care professionals and the nature of diagnosis and treatment, as well as between concepts of autism at the scale of individual treatment and at the level of the state and national systems of health care. Like the discussion on Brazil, Italy similarly provides a fascinating context for the study of autism as a condition that is diagnosed globally, yet treated and conceptualized locally.

cropped-cropped-2009cover-copy1.jpgAutism in Brazil: Diagnosis, Identity, and Treatment Models

Read the full article by Clarice Rios and Barbara Costa Andrada here: http://link.springer.com/article/10.1007/s11013-015-9448-5

Brazil’s model for delivering social services to the developmentally disabled was directly modeled after the Italian system of deinstitutionalization and social integration of the mentally ill and neurodiverse. Treatment interventions for people with autism, however, were not included in Brazilian social services until the early 2000s, when adolescent and child mental health conditions were integrated into existing mental health systems. This shift increased programming for people with autism, however concerns accompanied this new system about the nature of diagnosis and treatment, as expressed differently by mental health professionals and the parents of children with autism.

Rather than viewing autism as an integral piece of an individual’s identity, Brazilian mental health professionals instead employ a social model of disability that stresses the environment that a person with autism exists within. Therapies emphasize social inclusion and bolstering all mental health clients’ sense of autonomy, so as to combat the exclusion and institutionalization of the individual. This model did not emphasize treatment plans specific to autism, but rather sought to improve the lives of all clients with mental disabilities. Mental health professionals voiced concerns about creating autism-specific services, saying that these programs would exclude people with other forms of mental disability from seeking appropriate care (and exclude people with autism from engagement with people of other mental disabilities.)

Parent activists who have children with autism, on the other hand, take an identity-based approach to championing the rights of people with autism. They argued that by underscoring the specific nature of autism as a mental disability, and providing services tailored to the treatment of autism, their children would be better prepared for social inclusion. Parents feared under-diagnosis of the condition, which would mean that their children– failing to have a certified diagnosis by a health professional– would be unable to seek out care resources and early intervention programs to improve behavioral and social outcomes.

In both instances, the authors stress that the dichotomy between medical and social models of disability is scarcely stable when examining autism in Brazil. Mental health professionals and parents of children with autism both grasp the importance of medical certification of autism (diagnosis) as a means to access services (that are aligned with the social model of illness.) However, parents and professionals disagree on the nature of these services; parents hold that social inclusion for people with autism requires an understanding of their difference from non-autistic people, while professionals strive to avoid employing specific diagnosis categories as a means to separate the kind of care and services they deliver to clients with other mental health conditions.

The Brazilian case thus highlights the nature of autism and mental disability as both a medical and a social condition: one that must be negotiated, treated, and diagnosed in light of its manifold implications for human health, development, and social life.