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To understand how parents make the decision to implant their deaf young children with cochlear implants, focusing specifically on the concepts of normality, medicalization, and stigma.

I conducted 33 semi-structured interviews with the hearing parents or parent of children with cochlear implants. In all but two families I interviewed the primary caretaker which in all cases was a mother. In the remaining two interviews, I interviewed both parents together. Because of the relative scarcity of families with children with cochlear implants, and the difficulty in connecting with these families, I used a convenience sample, and I did not stratify it in any way. The only requirement for parents to be interviewed is that they had at least one deaf child who had been implanted with at least one cochlear implant. Although this is a small sample, the findings are transferable to other families with the same sociodemographic characteristics as those in my study.

Parents in the study focused on three key concepts: normality, risk analysis, and being a good parent. Dispositional factors such as the need to be “normal” and the desire for material success for one's children appeared to moderate the cost-benefit calculus.

This interview project concentrated on hearing families who had implanted their deaf children with cochlear implants; it does not include culturally Deaf parents who choose to use American Sign Language (ASL) with their Deaf children. Understanding how Deaf families understand the concepts of normality, medicalization, and stigma would shed light on how a distinctly “abnormal” group (by a statistical conception of normal) – ASL-using Deaf people-explain normality in the face of using a non-typical communication method. One can learn a lot by studying the absence of a phenomena, in this case, not implanting children with cochlear implants. It is possible that the existential threat felt by some Deaf people, specifically the demographic problem presented by cochlear implants, led Deaf educators or parents to resist being the subject of research.

Overwhelmingly the sample was female, and white. Only two participants were male, and none of the participants were non-white. The lack of diversity in the sample does not necessarily reflect a lack of diversity of children receiving cochlear implants. Medicaid, which disproportionately covers families of color, covers cochlear implants in most cases, so low SES/racial intersectionality should not have affected the lack of diversity in the sample. However, the oral schools are all private pay, with few scholarships available, so low SES/racial intersectionality in the sampling universe (all children who attend oral schools), may have played a part in the lack of racial diversity within the sample.

Parents in this study were very specific about the fact that they believed cochlear implants would lead to academic, professional, and personal success. They weaved narratives of normality, medicalization, and stigma through their stories. Normality is an important lens from which to see stories about disability and ability, as well as medical correction. As medical science continues to advance, more and more conditions will become medicalized, leading to more and more people taking advanced medical treatments to address problems that were previously considered “problems with living” that are now considered “medical problems” that can be treated with advanced science.

This chapter's contribution to the sociological cochlear implant literature is it's weaving of narratives about normality, stigma, and medicalization into parental stories about the cochlear implant decision-making process. Most literature about the cochlear implant decision-making process focus on cost-benefit analysis, and logical decision-making processes, whereas this paper focuses on decision-making factors stemming from bias, emotions, and values.

This study examines chronic illness, disability and social inequality within an exposure-vulnerabilities theoretical framework.

Using the National Survey of Drug Use and Health (NSDUH), a preeminent source of national behavioral health estimates of chronic medical illness, stress and disability, for selected sample years 2005–2014, we construct and analyze two foundational hypotheses underlying the exposure-vulnerabilities model: (1) greater exposure to stressors (i.e., chronic medical illness) among racial/ethnic minority populations yields higher levels of serious psychological distress, which in turn increases the likelihood of medical disability; (2) greater vulnerability among minority populations to stressors such as chronic medical illness exacerbates the impact of these conditions on mental health as well as the impact of mental health on medical disability.

Results of our analyses provided mixed support for the vulnerability (moderator) hypothesis, but not for the exposure (mediation) hypothesis. In the exposure models, while Blacks were more likely than Whites to have a long-term disability, the pathway to disability through chronic illness and serious psychological distress did not emerge. Rather, Whites were more likely than Blacks and Latinx to have a chronic illness and to have experienced severe psychological distress (both of which themselves were related to disability). In the vulnerability models, both Blacks and Latinx with chronic medical illness were more likely than Whites to experience serious psychological distress, although Whites with serious psychological distress were more likely than these groups to have a long-term disability.

Several possibilities for understanding the failure to uncover an exposure dynamic in the model turn on the potential intersectional effects of age and gender, as well as several other covariates that seem to confound the linkages in the model (e.g., issues of stigma, social support, education).

This study (1) extends the racial/ethnic disparities in exposure-vulnerability framework by including factors measuring chronic medical illness and disability which: (2) explicitly test exposure and vulnerability hypotheses in minority populations; (3) develop and test the causal linkages in the hypothesized processes, based on innovations in general structural equation models, and lastly; (4) use national population estimates of these conditions which are rarely, if ever, investigated in this kind of causal framework.