I am a cultural anthropologist who conducts research with deaf children and their families in Mexico City. Echarle ganas is a Mexican colloquial expression that roughly translates to “you have to give it your all.” “Échale ganas!” or “work at it!” is often heard as a rallying cry when things are not going as desired. This saying is typically meant to be motivating, but it can also provoke humiliation and induce blame, especially when set in opposition to flojera (laziness). Participants in my research described hearing this call to action from family members, doctors and teachers. I highlight echarle ganas in order to underline the circulation of isolationist and individualistic attitudes that parents of deaf children encounter during their support-seeking quests for information about deafness and needed services.

One consequence of hearing these sayings repeatedly was that families felt individually responsible for resolving their children’s communication issues. I argue that isolationist and individualistic ideologies obscure structural forces (a Mexican public education system that does little to support deaf school-aged children, for example) and instead put onus on individual parents and children to create solutions. Such attitudes also work against the kind of support families eventually found through community involvement (see also Pfister 2018; Pfister and Vindrola-Padros 2018) and may hinder parents’ organization to advocate for access and opportunities for their children.

Most hearing family participants with whom I worked said they knew nothing about deafness or sign language upon diagnosis (at a mean age of 1.5 years). As they began to understand an essential biological mismatch between themselves (hearing) and their children (deaf)—one that prevented naturally-occurring language development in the home—nearly all turned first to public health programs. When parents expressed their concerns to medical professionals, many were told laziness was the reason for children’s language delays. Doctors, nurses and public health workers repeatedly told parents, “el niño está flojo” (“the child is lazy”) or “hay que echarle ganas” (“you have to work at it”).[i] For example, Yaeneli recalled bringing her son to the doctor with the suspicion he might be deaf, but the doctors claimed laziness was the reason her son did not speak. In other words, the issue was presented as a result of insufficient effort on the part of both her and her son. She said:

At first they said that no, my son was fine and that he could hear. They said he didn’t speak because he was flojo (lazy) and prone to tantrums (berrinchudo). So, after all that, we just continued down the same path [like normal, despite our concerns].

During what I conceptualize as families’ support-seeking pilgrimages (Pfister 2018), parents interacted with doctors, public health workers, and therapists who insisted deaf children should learn to speak and often advised explicitly against Lengua de Señas Mexicana (Mexican Sign Language or LSM) or did not mention LSM as an option.[ii] Instead, they recommended bio-medical and therapeutic interventions (i.e. hearing aids, cochlear implantation and language therapy). However, many parents eventually became disillusioned with medical authority as they realized the very limited efficacy of these interventions for their children, at least without also accessing LSM. Eric said:

We were filled with doubts. Until, finally, we decided, well, we’re not experts, but we just have to trust the doctors and echarle ganas—and that’s how we went about it.

These two sayings—referencing laziness on one hand and giving it your all on the other—are two sides of the same ideological coin. Echarle ganas is used to counter the pervasive and blaming flojo narrative. By echandole ganas (putting effort into it), parents conceptualize themselves as doing something, an alternative to giving up or becoming lost in denial or depression—stages many parents mentioned followed diagnosis.

When parents are told that their children are lazy, or that they need to echarle más ganas (put in more effort), parents receive a message that the origin of the struggle (language) is individually located (not social) and therefore must be resolved through personalized effort within a bounded family unit (in isolation). In other words, they remain secluded from other families with similar lived experience while passively accepting blame. Instead of receiving professional advice or social support, they believe it is incumbent upon them to find solutions for an “inhabitable world” (Friedner and Cohen 2015) for their children, but without a clear path to practical resources and information.

Many families with whom I worked eventually grew frustrated with bio-medical options but eventually found support and useful advice through signing communities, like that surrounding Instituto Pedagógico para Problemas del Lenguaje (IPPLIAP), a semi-private primary school and my primary research site. I asked my friend Fabiola, a psychologist connected to IPPLIAP for over 20 years, for her take on echarse ganas as it relates to parents seeking information in medical contexts and beyond. She said:

Sure, it’s easy for doctors, or therapists, or teachers to say to parents, especially mothers, échale ganas! but without telling them how. And anyhow, it’s just never that easy!

Parents’ use of echarle ganas to discuss the extra effort and dedication they put toward different aspects of their deaf children’s lives evidences internalization of an implicit, individual responsibility. For example, Rita said:

Yeah, you have to commit yourself fully to your children. If it’s difficult for hearing children, it’s triple for deaf children. You have to suffer three times as much, echarle ganas lo triple! (give it all you’ve got three times over!).

Rita’s quote illustrates how, rather than problematizing the broader socio-political structures that proved frustrating, participants internalized individualism. I understood her use of echarle ganas as referring to her own expectation to persevere within systems ill-equipped to serve her son. In other words, the burden of finding a place at a signing school, traveling hours daily on their school commute, and learning LSM, a new language in a different modality, were ways she and her son “suffered” (suffering she imagined to be triple that which hearing children and their parents experience). The individualistic approach eclipses focus from structural failings (medical and educational, among others), including the limited availability of resources to communicate successfully with their children (especially endorsement of, and access to, LSM). It also obscures diverse circumstances (social, economic and otherwise) positioning families’ differential access to the relatively scant services and signing communities.

I argue that flojo narratives and echarle ganas—and the ideologies they imply— present some of the many obstacles families of deaf children face as they seek support and services. While I write specifically about how families of deaf children interpreted this saying, it is important to point out that echarle ganas is also commonly used in reference to daily challenges ranging from trying something new—for example, to difficult school or work tasks and even relationship or domestic problems. The families featured here received these messages in predominantly medical contexts, though the messages themselves are not inherently medicalized. Instead, the colloquial nature of the sayings—and their vast circulation—point to a more tacit understanding that individuals are responsible for themselves, their families, their destinies. In this case, that meant finding ways for deaf children to incorporate into predominantly-hearing society.

Language, as a collection of “living memories” (Kermit 2009), gives us insight into the experience of its users. Ideologies promoted by colloquial Mexican sayings either encouraged citizens to be isolated, self-reliant problem solvers—that is, “self-governing citizens” (Foucault 1977), or people to be “governed through community” (Rose 1999) in lieu of state governance. In other words, the political and material realities of life in Mexico City mirror the isolationist and individualistic messages of these sayings through local “ethopolitics,” or the relatively “new relation between ethical citizenship and responsible community fostered, but not administered, by the state” (Rose 2000, 4). IPPLIAP, for example, was the only sign-based, bilingual (Spanish and LSM) education for deaf children offering a nationally-recognized certificate of primary education[iii]. IPPLIAP and other sign-based communities of practice (Lave and Wenger 1991; Wenger 2000) function to fill gaps in services and information that the public sector did not adequately provide, which creates a “disorientation” of rights (Chaudhry 2015) to accessible language. Viable options for learning LSM were not accessible to all Mexican citizens. Therefore, families either had to echarle ganas on their own or find their own community of practice where they put forth new, additional efforts toward learning a new language and sociality. Both outcomes (self-governance and community governance) underscore a neoliberal influence on individual responsibility as it relates to deafness and disability (see also Friedner 2015; Friedner 2010; Shakespeare 2006).

 

References

Chaudhry, Vandana. 2015. “Neoliberal Disorientations: Changing Landscapes of Disability and Governance in India.” Disability and Society 30 (8): 1158-1173

Foucault, Michel. 1977. Discipline and Punish: The Birth of the Prison. New York: Doubleday.

Friedner, Michele. 2015. Valuing Deaf Worlds in Urban India. New Brunswick: Rutgers University Press.

———. 2010. “Biopower, Biosociality, and Community Formation: How Biopower is Constitutive of the Deaf Community.” Sign Language Studies 10 (3): 336-47.

Friedner, Michele, and Emily Cohen. 2015. “Inhabitable Worlds: Troubling Disability, Debility, and Ability Narratives.” Somatosphere. http://somatosphere.net/2015/04/inhabitable-worlds-troubling-disability-debility-and-ability-narratives.html

Kermit, Patrick. 2009. “Deaf or deaf? Questioning Alleged Antinomies in the Bioethical Discourses on Cochlear Implantation and Suggesting an Alternative Approach to d/Deafness.” Scandinavian Journal of Disability Research 11 (2): 159-74.

Lave, Jean, and Etienne Wenger. 1991. Situated Learning: Legitimate Peripheral Participation. Cambridge: Cambridge University Press.

Pfister, Anne E. 2018. “Predicament and pilgrimage: Hearing Families of Deaf Children in Mexico City.” Medical Anthropology.

———. 2017.  “Forbidden signs: Language Socialization and Therapeutic Approaches to Language in Mexico.” Ethos 45(1) 139-161.

Pfister, Anne E. and Vindrola-Padros, Cecilia. 2018. “Fluid and mobile identities
travel, imaginaries, and caregiving practices among families of deaf children in Mexico City.” In Healthcare in Motion: Immobilities in Health Service Delivery and Access, edited by Cecilia Vindrola-Padros, Ginger A. Johnson and Anne E. Pfister, 77-98. New York: Berghahn Books.

Rose, Nikolas. 2000. “Community, Citizenship and the Third Way.” In Citizenship and Cultural Policy, edited by Denise Meredyth and Jeffrey Minson, 1-17. Thousand Oaks, CA: SAGE Publications.

———. 1999. The Powers of Freedom. New York: Cambridge University Press.

Shakespeare, Tom. 2006. Disability Rights and Wrongs. London: Routledge.

Wenger, Etienne. 2000. “Communities of Practice and Social Learning Systems.” Organization 7 (2): 225 – 246.

 

Notes

[i] This analysis builds off of a 2013 discussion in Anthropologies: An Online Collaborative Project (http://www.anthropologiesproject.org/2013/03/dependency-mistrust-of-medical.html)

[ii] See also Pfister 2017

[iii] National recognition is a function of incorporation in Mexico’s Secretaria de Educación Nacional (the Mexican education secretariat or SEP).

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Anne E. Pfister is Assistant Professor of Anthropology at the University of North Florida. Her research investigates how deaf youth and their families experience deafness in Mexico City. Anne’s research has been published in Ethos, Collaborative Anthropologies, Visual Anthropology Review and Medical Anthropology(in press). She also co-edited a 2018 collection from Berghahn Books called “Healthcare in Motion: Immobilities in Health Service Delivery and Access.”

“Disability from the South: Toward a Lexicon” is a series edited by Michele Friedner and Tyler Zoanni. Contributors in this series consider what changes in theorizations of disability when research is located in places marked “Southern” and offer reconfigurations of keywords and concepts typically utilized in the study of disability.