Taking the Diss out of Disability

For many years, I uncritically repeated society’s terms for people of atypical cognitive, physical, and neurological makeup as disabled or disordered. I did so through a confluence of factors that prevented me from seeing such people more clearly and compassionately. Deficit terms and accompanying perspectives were ubiquitous, providing the language and ideology that constructed difference as deficiency while offering few alternatives that could enable different ways of viewing those assumed to be made of inferior or defective stuff.

Further, those characterized as disordered and disabled were “others” to me. The tendency to regard outsiders as defective and threatening has a long history in human society. For instance, the term “barbarian” has a Greek etymology originally referring to non-Greeks, foreigners who acted and spoke improperly from an ethnocentric perspective. This pejorative, politically saturated term was reserved for foreigners, antonymous with Greek citizens, and subject to attack and subjugation to bring them under civilized control. This perspective has since been applied to all who exhibit a foreignness, including those who exhibit a difference that may prompt feelings of threat. Society has developed a vocabulary to account for this view: homophobia, xenophobia, ethnophobia, Russophobia, and so on. To be different is to invoke fear, and following from fear, attitudes that diminish the other as inferior.

My own conversion story away from this deficit perspective began with the recognition that to many people, I am among the other. Although othering had occurred for much of my life, I had often been too naïve to recognize it for what it was. As a boy in 1950s-1960s Virginia, for instance, I attended segregated schools throughout elementary school. I learned through this experience that White people like me weren’t allowed to play with what we called “colored people” at the time. What I didn’t understand is why a White boy like me took such abuse from these same kids. It was only much later, in adulthood, that I recognized that my parents—both New Yorkers, one Catholic and one Jew—were considered barbarians by our neighbors, and as the oldest son in the family, I experienced my neighbors’ ostracism as a problem in me, rather than in their treatment of me.

But being an ethnic barbarian, although the feelings of rejection have stayed with me well into adulthood, has faded for hybrid Whites like me, with people of color who can’t pass the eyeball test taking our place. Lucky me: The Gates to acceptability had opened a crack for people who superficially fit in. What I didn’t know was that my neurology had built in another source of difference, also characterized by deficit views. As I relate in my Teachers College Record essay “Confessions of a mad professor: An autoethnographic consideration of neuroatypicality, extranormativity, and education,” I learned through raising my daughter that she and I are both, by diagnosis, mentally ill, with chronic anxiety, Tourette’s syndrome, Asperger’s syndrome, obsessive compulsiveness, and other atypical traits contributing to our makeup. Here’s how people tend to describe us:

A mental illness is a medical condition that disrupts a person's thinking, feeling, mood, ability to relate to others and daily functioning. Just as diabetes is a disorder of the pancreas, mental illnesses are medical conditions that often result in a diminished capacity for coping with the ordinary demands of life. Serious mental illnesses include major depression, schizophrenia, bipolar disorder, obsessive compulsive disorder (OCD), panic disorder, posttraumatic stress disorder (PTSD) and borderline personality disorder. The good news about mental illness is that recovery is possible. Mental illnesses can affect persons of any age, race, religion or income. Mental illnesses are not the result of personal weakness, lack of character or poor upbringing. Mental illnesses are treatable. Most people diagnosed with a serious mental illness can experience relief from their symptoms by actively participating in an individual treatment plan.

This description comes from the National Alliance on Mental Illness, a group dedicated to helping those with mental illness diagnoses navigate their worlds in the most fulfilling ways possible (NAMI, n. d.). Nonetheless, their language represents mental illness as a disease, albeit one that is treatable. We have a disorder, like diabetes, that can be cured or alleviated; and our mental illness is our personal problem, and only someone else’s when we act out.

Through my writing and discussions with others interested in what is known as “critical disability studies”—or in my group with Joe Tobin and Kyunghwa Lee at Georgia as “post-disability studies”—I have begun to fight back against the notion that we are sick people whose deficits must be treated if we’re to be happy, or at least if we’re to be less of a bother or threat to others. I’ll next outline some general principles that guide this work. Although my own particular interest is in mental health difference, I find similarities between the barbaric treatment of people considered mentally ill and those constructed as foreigners and others based on other traits: immigrant status, sexual orientation and identity, racial and ethnic group membership, and countless more means of discrimination and ill treatment.

Much of what I believe follows from my reading of Soviet psychologist L. S. Vygotsky’s (1993) overlooked work in the unfortunately named field of defectology, whose semantic suggestions are contradicted by Vygotsky’s frequent assertion that difference does not produce defect. One of Vygotsky’s great insights came through his consideration of how to address a society whose many wars in the early 20^th century produced a generation of maimed and cognitively affected youth. Vygotsky made a key distinction between the primary and secondary disability. The primary disability refers to the point of difference itself: being blind, deaf, or otherwise departing from the evolutionary norm. Vygotsky argued that this condition is not a problem until the people around the person of difference begin to treat it as a defect. The feelings of pity or scorn accompanied by this patronizing view produce what Vygotsky believed to be far more debilitating: the secondary disability in which the individual affected begins to appropriate feelings of inferiority through the social problem of being treated as deficient.

Vygotsky’s assertion that addressing human difference is a social problem, rather than one for the individual to recover from, has taken on a profound importance in my thinking. In contrast to the widespread belief that mental health variation is a problem for individuals to solve with help from medical professionals, Vygotsky believed that addressing difference is a responsibility of the social collective. If the secondary disability is the most pernicious consequence of being different, then eliminating beliefs that pathologize difference becomes a social responsibility. People cannot feel valued without affirmation. By viewing human beings in light of their differences, constructed as deficits, however, affirming their strengths becomes less likely. Vygotsky’s approach thus calls for a widespread education of the “abled” so that they treat the differently abled with greater respect, support, and above all inclusion.

I have adapted Vygotsky’s beliefs about treating people of difference inclusively to mental health issues, and have come up with the metaphor of positive social updraft to account for social activities through which points of difference become effaced and strengths are allowed to flourish. The updraft metaphor comes from air current that are drawn upward, carrying elements from the environment with them in their flow. A positive social updraft provides an activity channel through which people of difference may participate and become validated, and through which they are viewed and constructed in terms of their strengths rather than diminished according to their departures from the evolutionary norm.

In one recent study, for instance (Cook & Smagorinsky, 2014), we looked at one young woman characterized by depression, Asperger’s syndrome, obsessive compulsiveness, and other mental health diagnoses. She experienced difficulties at home and in her social life due to her obsessiveness, especially about her interest in the Japanese anime culture; however, her involvement in that online community’s practices—coauthoring fanfiction, producing art, developing relationships—provided her with a community of acceptance and appreciation. This positive social updraft was provided by the anime art community in which her interactional difficulties were minimized and such Asperger’s traits as her focus on detail served as strengths.

Although I can’t say that living with Asperger’s syndrome has been unproblematic for me, I would say that I owe much of my professional success to my focus, concentration, and attention to detail—all “symptoms” of my “illness.” I have come to refer to this package of traits as my Asperger’s Advantage, something I find that people envy. I’m often asked why I am a productive writer, and my answer always comes back to my Asperger’s-driven drivenness.

Many people on the margins of the mental health spectrum have few resources from which to contest the belief that they are defective, and are left to believe what everyone tells them. A big part of my reasons for “coming out” with my own mental health story has been to contribute to the construction of a social environment in which, rather than being viewed as disordered, we are understood to follow our own order. I hope that eventually, rather than being viewed as disabled, we will have opportunities to thrive amidst people who are willing to look past our surface differences and learn about how our abilities can make contributions to the greater good. Changing society so that it is educated about the social responsibility that people should feel toward “others” is a big task, and my various essays have been offered as modest contributions toward the goal of helping to construct a positive social updraft through which others treated as “others” may find worthwhile social activities that may help cultivate their strengths in a world of difference.

References

Cook, L. S., & Smagorinsky, P. (2014). Constructing positive social updrafts for extranormative personalities. Learning, Culture and Social Interaction. Available at http://www.petersmagorinsky.net/About/PDF/LCSI/LCSI_2014.pdf

National Alliance on Mental Illness. (n. d. ). Mental illness. Arlington, VA: Author. Retrieved October 13, 2014 from http://www.nami.org/Template.cfm?Section=By_Illness

Smagorinsky, P. (2011). Confessions of a mad professor: An autoethnographic consideration of neuroatypicality, extranormativity, and education. Teachers College Record, 113, 1701–1732. Available athttp://www.petersmagorinsky.net/About/PDF/TCR/TCR2011.pdf

Smagorinsky, P. (2012). Vygotsky, "defectology," and the inclusion of people of difference in the broader cultural stream. Journal of Language and Literacy Education [Online], 8(1), 1–25. Available athttp://jolle.coe.uga.edu/wp-content/uploads/2012/05/Vygotsky-and-Defectology.pdf

Smagorinsky, P. (2012). "Every individual has his own insanity": Applying Vygotsky's work on defectology to the question of mental health as an issue of inclusion. Learning, Culture and Social Interaction, 1(1), 67–77. Available at http://www.petersmagorinsky.net/About/PDF/LCSI/LCSI_2012.pdf

Vygotsky, L. S. (1993). The collected works of L. S. Vygotsky. Volume 2: The fundamentals of defectology (abnormal psychology and learning disabilities) (R. W. Rieber & A. S. Carton, Eds.; J. E. Knox & C. B. Stevens, Trans.). New York: Plenum.