This is a blog post summarizing the book Made to Hear: Cochlear Implants and Raising Deaf Children (University of Minnesota Press, 2016).
Made to Hear is an ethnography I conducted inside a U.S. cochlear implant (CI) clinic using observations and interviews. I also interviewed parents who made the decision for their child to get a CI. Interviews took place at their homes or at support groups. The research focuses on deaf children – especially infants and toddlers – because the nature of this group requires parents to make decisions for them and over 95% deaf children have hearing parents. Thus, the study examines the experiences of hearing parents as they go through the process of getting a CI for their deaf child, as well as the institutional norms, discourses, and practices of the CI clinic.
Important context to understand:
- In the U.S., by law nearly all newborns undergo a hearing screening to identify deaf children as early as possible. This, along with other clinical findings and the lowering of the minimum age for implantation to twelve months (or earlier if the surgeon believes it is necessary), has resulted in CIs being given to children very early in life (for some children, as early as six months old).
- There has been controversy over CIs, as sign language researchers, Deaf advocates, and others have highlighted the potential risks associated with the surgery, potential device failures, the fact that not all children who receive a CI acquire spoken language (and thus experience language deprivation because they are often discouraged from learning a sign language), as well as question the view that deafness is a medical problem. Regardless of the controversies, more and more parents decide to get the CI.
- There is a need to better understand the messaging that parents get in the clinical, educational, and early intervention contexts.
In order to investigate parents’ experiences, I observed clinical appointments, visited families’ homes, school programs, and parent support groups. Some of the main findings in the book are:
- Mothers were the majority of parents in the clinic. While fathers did sometimes attend, more than 90% of the time, it was the mother who was bringing the child to the clinic regularly, going to school meetings, or parent support groups. This is important because women face many pressures in society to be a “good mother.” They make decisions about their deaf child not just because of information they receive in the clinic or school, but also because of cultural beliefs about disability in general (i.e., that it is ‘bad’ and needs to be ‘fixed’). These cultural beliefs influence their decisions: how can mothers value their child’s deafness and the deaf communities that may have vital knowledge for them if society devalues disability more broadly? How can mothers advocate for their deaf child’s need to access language – in any form – in the face of a powerful medical and intervention system that heavily promotes CIs and spoken language to the exclusion of sign language, even when this narrow approach may be harmful?
- Pediatric cochlear implantation takes years; it is not a one-time event and requires a lot of therapeutic labor. While YouTube videos showing children “hearing for the first time” continue to be popular, these videos deceive viewers into thinking cochlear implantation is an instant and one-time fix for deafness. The reality is much, much different. In the United States implantation is a years-long process that consists of five stages of implantation: identification, intervention, candidacy, surgery, and long-term follow-up. Diagnosis may take many months. Families then have to try hearing aids and are asked to engage in early intervention strategies that focus on developing listening skills. The CI is not a “first line” treatment and can only be obtained after showing other interventions did not yield enough benefit. Once this is determined, then parents have to prepare for the CI. Children have to be medically approved (no other general health conditions or anatomical issues that would mean implantation is not feasible) and audiologically approved (there are specific criteria for the type and amount of hearing loss) as ‘candidates’ for insurance purposes. There are also social requirements, which includes consideration from the perspective of the clinic in terms of whether or not it will be “successful” (such as whether the parents are compliant, understand the work involved, and so on). As the discussion in one of the book’s chapters covers, becoming a CI candidate is not just based on medical and audiological information, but also social aspects. Clinics may consider how compliant they view parents to be, and may consider the fact that another language besides English is spoken at home as a potential disqualifier. Finally, after surgery, parents must undertake a years-long program of learning how the device works, how to maintain the device and an ongoing relationship with a clinic, and consistently engage in time-intensive auditory training.
- The brain is the central focus of implantation practices and claims about how the brain works frame how parents understand deafness and CIs. This research found CIs to be presented as a way to give access to the brain by bypassing the ear. The parents are led to believe that despite the ear not working, they could still ‘train the brain’ to hear because of the access the CI provides and because of the brain’s plasticity, especially at an early age, which drives earlier implantation. Thus, parents were repeatedly told to ‘develop’ the ‘right’ neural pathways for language (auditory) and that if children were exposed to ASL it would impede spoken language acquisition, despite research showing that this is not neurobiologically true. As such, we know that clinicians in some CI clinics regularly deploy neurological arguments to convince parents that sign language exposure is dangerous and can impede or contaminate their ability to learn speech. We need more social science research that investigates the power neurological discourse has when medical professionals are counseling families.
Suggestions for moving forward:
- There needs to be a greater conversation and formal relationships between Deaf people, including Deaf mentors and/or other members of the signing community and hearing mothers of deaf children. Many mothers experienced frustration with strict anti-ASL messaging from the clinic and used sign language when they needed to, often without telling professionals. More space for conversation and alliance between mothers and Deaf communities could be helpful.
- There needs to be less emphasis placed on either/or with regard to ASL/speech in audiological training. Many families were open to using both, but professionals hold such bias against ASL that this was not seen as something they could pursue without fearing disapproval and reprisal from the medical and educational professionals they worked with. The power that medical and educational professionals have meant that parents listened to their recommendations, even when it might not be working for their child. It also meant that they might not always adhere to their recommendations and keep this a secret. The bottom line: this kind of unaccepting clinical culture harms children and their families.
- There needs to be greater conversation between implantation professionals in clinics and schools and Deaf community members, especially those from diverse racial and ethnic backgrounds. Based on the book research, current pediatric cochlear implantation practices are not always family friendly or inclusive. This is true in regards to a lack of valuing of Deaf perspectives, but also with regard to less tolerance for minority or immigrant families. In a follow up research project, for example, immigrant and minority parents discussed their experiences of racism and bias in CI clinical settings.
In conclusion, CIs are not a one time, sure ‘fix’ for deafness. There remain a variety of issues related to improving families’ experiences with implantation as well as institutional culture within CI clinics. In the follow up study mentioned above – which is currently still an ongoing research project – many parent narratives showed how clinical notions of ‘success’ with CIs aren’t necessarily the same as parents’ ideas of success. Indeed, many of the families in this follow up study come to find a mix of ASL and spoken language to be good for their children. In looking back, they often feel angry and dismayed, feeling that following professionals’ advice to avoid sign language at all costs harmed their child and delayed their access to language, community, identity, and self. As their stories show, there are many ways to be deaf and many ways to have CIs; our future research must center the stories of CI users so that we can continue to improve services and ensure all deaf children can flourish.
Laura Mauldin is an Assistant Professor in Women’s, Gender and Sexuality Studies and Human Development and Family Sciences at the University of Connecticut. She is a sociologist and disability studies scholar who studies science, technology and medicine from a feminist perspective. She is also a nationally certified sign language interpreter who lives and works in New York City. She’s on Twitter as @mauldin_laura