Language, Literacy, and Disability: Lessons from Rett Syndrome
Dr. Usree Bhattacharya
Language and Literacy Education
University of Georgia
It was June 2018, and we were seated in a neurologist’s office, severely jetlagged from having returned from France the night before. After a turbulent six months of uncertainty, then hope, and next slow-growing despair, we received resolution but not relief: our baby daughter Kalika had the rare neurological disorder, Rett Syndrome. It is caused by an MECP2 gene mutation (Amir et al., 1999), leading to severe, complex disabilities. Individuals with Rett Syndrome experience apparently typical development for a short period of time (Einspieler & Marschik, 2019), succeeded by “gradual reduction of speech and purposeful hand use, seizures, autistic-like behaviour, ataxia, intermittent hyperventilation and stereotypic hand movements” (Lotan, Isakov, & Merrick, 2004, p. 731), among other serious symptoms. Kalika smiled at us as we heard this news, and at two-and-a-half years old was probably about as prepared to process it as we were. The nurse practitioner (NP) informed us that Kalika would not speak again, that she would never be able to use her hands, she would never go to college, and would likely battle serious medical issues for life.
For this little child, labeled “nonverbal” by the NP, multilingualism had been a defining aspect of life. Kalika was able to speak in three languages until she experienced regression at the age of two: Bangla, English, and French. In addition, she encountered Sanskrit and Hebrew in religious contexts, and spent several hours listening to Punjabi hip-hop every day. She had also been immersed in Hindi during our many trips to India and in French with her Parisian babysitter for several weeks. She had also soaked in German three weeks prior, during a short stay in Berlin. Back home in Athens, Georgia, she had participated in Spanish-English storytime at the child development lab she attended, which I captured as part of a research project on language socialization. Three days after her diagnosis, we were leaving for a month’s stay in Costa Rica, where she would have a babysitter who only spoke Spanish. As someone who grew up amid the rich linguistic landscape of the Indian capital, New Delhi, this is exactly what I had envisioned for my daughter. I simply had no template, unfortunately, to understand the words “nonverbal” and “ineducable,” which were applied to individuals with Rett Syndrome, as I discovered during Google Scholar searches that fateful night.
I am tenure-track faculty in the Language and Literacy Education Department at the University of Georgia, and my research has primarily focused on the language and literacy socialization of young boys at an anathashram (orphanage) in suburban New Delhi, now spanning twelve years. After Kalika’s diagnosis, I discovered that there had been little research on individuals with Rett Syndrome in my field. What existed within educational scholarship was primarily from a communication disorders perspective, a world entirely unfamiliar to me. Encouraged by a faculty mentor, I authored the first educational literature review on individuals with Rett Syndrome (Bhattacharya, 2019). Three months after her diagnosis, I obtained IRB approval to conduct a detailed investigation into my daughter’s language socialization, even as I struggled to understand what it would mean given her “nonverbal” diagnosis.
On Christmas Eve this year my daughter will turn four; a year and a half since her diagnosis, I can reflect on this journey with optimism, even as the disease has taken a hard toll on our family. My “nonverbal” Kalika now speaks hundreds of words a day, in English and Bangla, through a revolutionary eye-tracking device, which allows her to “speak through her eyes.” She selects what she wants to say using intentional eye gaze on her device, which then “speaks” for her. The technology is at the heart of multiple projects I am conducting, in collaboration with some wonderful students as well as other research collaborators. I wanted to outline a few lessons I have learned on this journey from my perspective as an applied linguist:
1) Disability issues remain marginalized within our discipline. A cursory search of the online 2019 AAAL program reveals that a mere two research presentations (out of some 600) directly addressed disability. According to the CDC (2019), more than a quarter of the US population experiences some type of disability; the relationship between language and its learning in the context of disability thus has to be seen as a critical site for study within applied linguistics. In an era in which the AAAL voices its increasing support to issues of diversity and inclusion, this merits immediate and greater attention by both the organization and the wider field.
2) Our conceptions of language and literacy remain normative. In one of Kalika’s developmental tests early on, I was asked to state whether she “Tells about one’s feelings or thoughts.” I asked for clarification: She is able to communicate this without speaking words; can I respond with yes? Pat came the reply from the person administering the test: “no; tell as in speak.” Working with Kalika—the girl who speaks through her eyes—has meant not only gaining knowledge in areas that are utterly unfamiliar to me, but also engaging in constant unlearning of normative ways of thinking and knowing about language and literacy. I would encourage graduate students to be conscious when they impose a “tell as in speak” constraint in their research. What voices and ways of expression do we mute when we draw boundaries this way?
3) We need to fight deficit-based perspectives not only in second and foreign language teaching, but also in how we construct language use and learning in those who have disabilities. It has been revealing to me to discover the many ways in which the deficit-based discourses that circulate in second and foreign language learning are parallel to discourses about those who deal with disabilities. In drawing attention to this parallel, we can help illuminate structures of inequality that circulate through such discourse in important areas in our field.
4) We have to continue disrupting the hold of labels in our field. Just as many applied linguists have cautioned us to complicate terms such as, e.g., “native speaker,” I have had to struggle against “nonverbal,” “disabled,” “ineducable” and many others since my daughter’s diagnosis. To some extent reliance on labels is inevitable in scholarly endeavors; however, that is not to say that constructs should not or cannot be problematized. They can, they should.
I am grateful for my own training and background in applied linguistics that has supported me and prepared me to explore this completely uncharted territory in scholarship. Ultimately, beginning research in this area has clarified for me what the most powerful motivation for my research is and has always been in applied linguistics: seeing how those on the margins make sense of their worlds, how they articulate their lives through language, and what it all means for equitable access to literacy—the power to tell your fullest story possible. Telling this story should encourage us to seek out more voices from across the ability spectrum.
Amir, R. E., Van den Veyver, I. B., Wan, M., Tran, C. Q., Francke, U., & Zoghbi, H. Y. (1999).
Rett syndrome is caused by mutations in X-linked MECP2, encoding methyl-CpG-binding protein 2. Nature Genetics, 23(2), 185-188.
Bhattacharya, U. (2019). “There is nothing to do with these girls”: The education of girls with Rett Syndrome. In P. Smagorinsky, J. Tobin, & K. Lee (Eds.), Dismantling the Disabling Environments of Education: Creating New Cultures and Contexts for Accommodating Difference. Peter Lang.
Centers for Disease Control and Prevention (CDC)(2019). Disability impacts all of as. Retrieved from: https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html
Lotan, M., Isakov, E., & Merrick, J. (2004). Improving functional skills and physical fitness in children with Rett syndrome. Journal of Intellectual Disability Research, 48(8), 730-735.