It’s 3:35 on a Tuesday. I’m behind the wheel, waiting in a line of cars to pick up my two children from school in Athens, Ohio. I’m steeling myself somewhat for what can be a tense moment. They’re hungry most of all. But they’ve also been subjected to the usual physical and mental demands of an 8 hour day at a public elementary. The bodily conformity expected of desks, of single-file lines and scheduled bathroom breaks. They’ve also been trained to control and display themselves in particular ways at certain times. There are appropriate moments for speech, for issuing the correct type of responses, and moments for not speaking, for staying silent, for listening. There are moments when they must raise their hand in a certain way and occasions for other physical transactions, the scripted movements of physical education. Even during the 20–30 minutes of outside recess they are allotted, there are spatial and physical conventions for play and athletics they need to conform to, often, in order to successfully navigate the social circles of the playground. You’ve got to be able to throw and catch a football, dribble a basketball, and know the coded spoken responses to specific games — if you don’t want to be picked last by the team captain.
Climbing into their dad’s car marks a transition. From these demands to the conventions and social cues of home life. My older son manages this transition effectively, so long as I have a generous amount of after-school snacks. He can navigate the physical and mental conventions expected of the typical school day. He has learned that these ways of being, acting, speaking, and moving follow a particular script, and he can conform his body to that script in ways that are socially acceptable to peers and teachers.
My younger son is different. Going home, or, more often than not, to violin lessons, cub scouts or soccer practice — he is at times sullen, explosive, irritable, at times all three. Unlike his brother. He has not been able to conform to the school day. When he explodes after school — and that is the only way I know how to describe it, a terrific explosion, the sound of all that anxiety releasing — it is because he has spent the last 8 hours completely silent. Unable to answer teacher’s questions and assessments, unable to respond to friends whispering across the table, or to shout out a scripted response in a playground game, it’s not that he refuses to participate, but that he cannot.
My son has selective mutism, a form of social anxiety that renders him incapable of speech in certain social settings. It manifests most often in school and other highly public situations where speech is demanded or expected.
He currently has three therapists, and his mother and I visit his school twice a week to support him and help him work through this “disability.” As part of his treatment, we engage in cognitive behavioral therapy — using strategies to incrementally desensitize his anxiety in certain environments, and positive reinforcement to encourage behavior where he overcomes his phobias, by speaking to a new person, for example. This past Wednesday was a big day for my son because he read his “morning work” (a few sentences) in front of his entire first-grade class. Eight months into the academic year, this was the first time he has spoken to his entire class, or any class, any year. His teacher, as a way of rewarding his behavior, is planning a party for him for his big achievement. My wife and I also reward him for big steps like this through a system of positive reinforcement. He gets a “brave ball” for every kind of achievement like this, fills a jar with the balls, and then is rewarded at the end, when the jar is full. We also have celebrations at home for when he takes major strides — such as his most recent achievement. The school, too, has responded by implementing an IEP, or Individualized Education Plan. Mandated by the Individuals with Disabilities Education Act (IDEA), IEP’s govern how schools implement accommodation to children with disabilities.
And the IEP does help tremendously. The pizza parties are fantastic, as are the ways teachers attempt to support his speechlessness and encourage him to “break out of his shell.” Even our brave balls, I must and do realize, are amazingly sweet and supportive. Yet — for me at least, as a father, and educator — all of these things have become, over the last few months, bittersweet as well.
Bittersweet because so much of this accommodation (on all of our parts) fails to recognize the problematic cultural narratives that accompany all types of disability. In our efforts to respond to disability, we are often pulled into a false and impossible narrative of “elimination” — hoping and working towards getting rid of an unwanted condition — when this condition is, in all actuality, a central aspect of the disabled person’s identity: physically, genetically, mentally, etc.
I love someone who has selective mutism, but I do not want to completely “eliminate the silence,” as in this awareness meme. The genetic traits that lead to my son’s mutism also allow him a considerable amount of empathy. He’s extremely sensitive to what others are thinking and feeling. He’s a keen observer of his surroundings, an unconditional listener, and incredibly intelligent. He’s different, and I love that difference.
There are multiple narratives of disability that circulate in our culture and and inform our understanding and treatment of the disabled. Yet, the narratives that are most active in reactions to my son’s selective mutism, and which are most visible in the cultural attitudes surrounding the above meme, are the narratives of overcoming and abjection.
The overcoming narrative, as explained by Rosemary Garland-Thomson in her article “Feminist Disability Studies,” defines disability as “a personal defect that must be compensated for rather than as the inevitable transformation of the body that results from encounters with the environment” (1568). In our early reactions to our son’s silence in the classroom, we responded with what, at the time, seemed like would be most helpful in getting him to “overcome” his speechlessness. I would often encourage him to “try talking today” when I dropped him off at preschool, promising him bribes of ice cream for such speech acts. In attempting to help him “overcome” his anxiety around speaking, I was also (unwittingly) adding to the pressure he felt when confronted with situations in which speech was expected. Instead of working with him on some of the underlying feelings he was having, instead of trying to understand why he might feel the need to remain silent, or to consider the function and effects of such silence, I demanded that he overcome his disability, just as I demanded he be rewarded for it.
Such treatment isn’t far removed, either, from the narrative of abjection, which identifies disability as “that which one can and must avoid at all costs” (Garland-Thomson, 1568). “Eliminate the silence,” the meme proudly proclaims, yet what are the costs of such elimination? What do we lose when we attempt to eliminate mutism or another disability? For one, we run the risk of erasing those identities that remind us of the kaleidoscopic difference of human life.
Seldom do we see disability presented as an integral part of one’s embodiment, character, life, and way of relating to the world. Even less often do we see disability presented as part of the spectrum of human variation, the particularization of individual bodies, or the materialization of an individual body’s history. Instead we learn to understand disability as something that is wrong with someone, as an exceptional and escapable calamity rather than as what is perhaps the most universal of human experiences. After all, if we live long enough, we will all become disabled. A feminist disability perspective suggests that we are better off learning to accommodate disabilities, appreciate disabled lives, and create a more equitable environment than trying to eliminate disability. (Garland-Thomson, 1568)
There is no elimination or cure for anxiety, only management. Moreover, the overcoming narrative functions to normalize the disabled’s participation in their environment and ease the tensions that others feel because their culture or social group refuses to accommodate difference. Why is the Individual Education Plan (IEP) so troubling? It locates the problem in the individual rather than in the school culture. These narratives of disability perpetuate a culture that is already painfully present in our public schools, a culture in which homogeneity and conformity are the rule, where difference is contained, erased, or eliminated.
Narratives of overcoming and abjection are troubling because they uphold a system where the disabled overcomes their disability only by conforming to the prevailing culture of an environment that cannot or refuses to accommodate them. Moreover, the disabled is often forced to play the starring role in these narratives despite the fact that s/he may not ever actually overcome (and certainly never eliminate) the disability.
I don’t want to perpetuate a system that demands conformity and elides difference.
But I also want desperately for him to overcome. I’m his dad. I want to celebrate his victories. This is, perhaps, the worst part of being a parent. How much do we try to effect systematic change? How much do we try to socialize our children into scripted conformity, to help them navigate their worlds as they are. I’m lost. Torn between those contradictory impulses. What can I offer, but a mute applause. Quietly celebrating the small steps he has made, but knowing, also, that we need to change our children’s classrooms, change the way we talk and think about the narratives of disability that are so entrenched in our culture.