Abstract
A cochlear implant (CI) has been described as an advanced kind of hearing aid, as a “bionic ear,” and as the first neuroprosthetic device to be used routinely. Taking these terms together, it’s not difficult to conclude that it is a surgically implanted electronic device that offers deaf people access to sound and (in some cases) spoken language. In the United States, the FDA approved it for use with adults in 1985 and with children in 1990. The whole procedure, including the testing, the device itself, the surgery, and the rehabilitation, costs upwards of $40,000, though for many Americans costs are wholly or partly covered by insurance. There are said to be 96,000 cochlear implant users in the United States alone, of whom 38,000 are children.
A decade or two ago the device was surrounded by controversy, particularly over its use with children. This was because deaf people, in the United States and in many other countries, were at that time struggling for the acceptance and legal recognition of national sign language as the language of the deaf community. Linguistic research may have proven that ASL, the BSL in the UK, and the LSF in France were natural languages, but social and legal acceptance was another matter. So while ENT departments were developing their pediatric implantation programs, deaf communities protested what they regarded as the “re-pathologization” of deafness—a denial of the right of a deaf child to use sign language and simply to be deaf.
At the very start of pediatric implantation, many ENT surgeons were convinced that, ultimately, all deaf children would use cochlear implants. At the time I wondered what made them so sure. Still, in the United States there’s a strong move in that direction. How does it work? How does a child born with hearing loss become a cochlear implant user? This, rather than the political debates (which haven’t totally disappeared), is the subject of Laura Mauldin’s book, Made to Hear: Cochlear Implants and Raising Deaf Children. The starting point for the research she carried out was a CI clinic in New York and the families referred there. Adult deaf people are absent from this study, as are parents who have preferred to learn and use sign language with their deaf child.
Having been a sign language interpreter before beginning graduate work in sociology, Mauldin is very aware of and sympathetic to a different view of deafness. However, as she explains, she avoided bringing it up or engaging in polemics with the subjects she talked to. A variety of specialisms play a role in implantation: audiologists, surgeons, speech therapists, social workers, teachers of the deaf. Mauldin spent two days a week at the center in the course of her fieldwork, and she talked to people from all of these specialties. In addition, and most importantly, she visited the family homes of a number of the children who had been (or were about to be) implanted at the center. In trying to understand how a child found to have a hearing impairment becomes a CI user, families’ decisions and experiences are obviously central.
Screening babies for hearing loss at a very early age is now routine (in the United States, as in most industrialized countries), and the practices described in the book are triggered by a baby’s failing this test. The clinic’s staff then do everything possible to gain the confidence of the baby’s parents to ensure that it will be brought back a few months later for further testing and assessment. It’s partly a matter of using reassuring language (never say that a child “failed” the test, for example) and partly a matter of not letting mothers off the hook. There will be telephone calls to remind them of follow-up appointments. Everything possible is done to convince the parents that deafness is terrible, but that it can be corrected—provided parents follow the clinic’s instructions to the letter. Signing with the baby must be avoided, however great the temptation.
Despite neurological and linguistic evidence to the contrary, these professionals all stress that learning sign language inhibits the development of spoken language. There is a gradual build-up, a considered and careful reinforcement, of parents’ dependence on the clinic, on the services it offers, and on the peer support groups and educational placements with which it is linked. Parenting, in this scheme of things, is transformed into a matter of training and therapy dedicated to ensuring that the child will gain maximum auditory benefit from the implant.
Let’s leave aside the question whether maximizing benefit from the implant should be the principal consideration in parenting a small child. In common with a few studies conducted in other countries, Mauldin finds that not all parents appreciate being turned into trainers. This is despite the fact that all the parents she interviewed had been recommended by the clinic, doubtless because they were regarded as particularly “compliant” (p.79). Some regret not being allowed time to simply enjoy their new child. They struggle with the obligation to treat every moment as an auditory training opportunity.
Concealed from the professionals, some parents do what they are not supposed to—for example, some parents use some signs in communicating with the child. Mauldin introduces the term “ambivalent medicalization,” which of course corresponds with what medical sociologists have discovered in studies of compliance with a range of therapeutic regimes. People make slight adjustments to the prescribed regime in order to reconcile it with other things they find important in their lives.
In other respects, too, there are parallels with studies of other conditions and other medical interventions. Where results are less than expected, it is always the patient or the parent who is blamed, never the technology. Critique coming from the deaf community is written off as “cultural” (or “merely ideological”) as opposed to the “scientific” practice of the professionals. But what is striking and distinctive in this study is the range of structures, institutions, and interests in which the technology is embedded, all dedicated precisely to optimizing its use and maximizing compliance.
All the parents in this study are white and middle class. Indeed, Mauldin points out (p.106) that there is a correspondence between what the implant appears to offer, the discipline it demands, and middle-class American values. Professionals believe that parents who drop out of the program or decide against implantation “tend to be foreign-born parents who have more cultural issues” or “parents who are not native [English] speakers” (p.97).
A number of issues follow from this useful study. One concerns the likely bias in selecting candidates for an intervention in which (not least because of its cost) demonstrable and quantifiable success is so important to the professional teams involved. The other, discussed for many years by bioethicists, concerns the ends of medicine. It is unreasonable to expect parents who know nothing of deafness to factor the well-being of the deaf community into the decisions they take on behalf of their child. But who should? And could it possibly make any difference?