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Children acquire language without instruction as long as they are regularly and meaningfully engaged with an accessible human language. Today, 80% of children born deaf in the developed world are implanted with cochlear devices that allow some of them access to sound in their early years, which helps them to develop speech. However, because of brain plasticity changes during early childhood, children who have not acquired a first language in the early years might never be completely fluent in any language. If they miss this critical period for exposure to a natural language, their subsequent development of the cognitive activities that rely on a solid first language might be underdeveloped, such as literacy, memory organization, and number manipulation. An alternative to speech-exclusive approaches to language acquisition exists in the use of sign languages such as American Sign Language (ASL), where acquiring a sign language is subject to the same time constraints of spoken language development. Unfortunately, so far, these alternatives are caught up in an "either - or" dilemma, leading to a highly polarized conflict about which system families should choose for their children, with little tolerance for alternatives by either side of the debate and widespread misinformation about the evidence and implications for or against either approach. The success rate with cochlear implants is highly variable. This issue is still debated, and as far as we know, there are no reliable predictors for success with implants. Yet families are often advised not to expose their child to sign language. Here absolute positions based on ideology create pressures for parents that might jeopardize the real developmental needs of deaf children. What we do know is that cochlear implants do not offer accessible language to many deaf children. By the time it is clear that the deaf child is not acquiring spoken language with cochlear devices, it might already be past the critical period, and the child runs the risk of becoming linguistically deprived. Linguistic deprivation constitutes multiple personal harms as well as harms to society (in terms of costs to our medical systems and in loss of potential productive societal participation).
Medical harm can be due to errors or complications of treatment, but it can also be due to failure to properly inform patients of the information they need to protect their overall health now and in the future. Inappropriate care of the latter type lies usually in unawareness on the part of medical personnel and on lack of coordination among the various medical professionals. Here we discuss medical harm related to the use of cochlear implants with deaf children. Because of lack of training and lack of coordination among professionals, there is a great deal of misinformation about the use of speech and sign language with deaf children who undergo cochlear implantation. Specifically, many medical professionals do not fully understand the ramifications of promoting speech-exclusive approaches and denying sign language exposure to a deaf child before and after implantation.
We describe several harms from the surgery itself, and argue that, ethically speaking, a standard for success should be cochlear implants measured against hearing aids which are less invasive and do not cause permanent damage to the cochlea. In particular, we need studies that show success provided by cochlear implants justifies excluding hearing aids as treatment. We also need more studies that identify predictors of successful implant use as well as which children will benefit from a cochlear implant.
Whether or not to give a child a cochlear implant has been a point of controversy since cochlear implants were first introduced. The debate is often presented as revolving around the question of whether or not cochlear implants would remove a child from Deaf communities and eventually threaten Deaf communities with extinction [1]. (In writing deaf, it is common convention to use a capital "D" when talking about communities that use a sign language as their major language, and "d" when talking about auditory status.)
We don't enter into this debate here. Nor do we enter into a discussion of the ethical questions surrounding cochlear implants, which are complex [2]. Instead, we look at the harms of the implant procedure, risks of hopes for outcomes not realized and leading to depression, economic consequences to society, harmful conflicts of ideology, and other questions associated with performing cochlear implantation surgery. We offer suggestions for remedies where possible.
Cochlear implantation has become the standard of care, so much so that in developed countries around 80% of deaf children are implanted, and in some places the figure is even higher [9]. As a result, the harm we address in this paper has already been experienced by a significant number of children.
Most of these children experience harm not only because they do not experience success with the cochlear implant but because they are also not provided with exposure to sign language. Over forty years of research on linguistic and psycholinguistic aspects of sign languages demonstrate that they are human languages acquired and used in the same ways as spoken languages with all the requisite grammatical properties. The lack of awareness of medical professionals that sign language gives deaf children unambiguous and total access to a human language is a source of great harm to many deaf children. With this background, in the following sections we expand on the different areas of concern that we have raised.
There are several types of harm associated with cochlear implantation. We focus first on those that follow from the increasingly common practice of health professionals advising, and sometimes insisting, that the family keep the implanted child away from sign language, an act that leads to the harm of linguistic deprivation. This harm is not the result of cochlear implantation itself, but of actions that lead to linguistic deprivation.
Many medical professionals faced with the parents of a deaf newborn or newly deafened child tell them that there are two routes with respect to language and educational choices: the oral route (i.e., access to spoken language only) and the manual route (i.e., using sign language with the child). They then explain that the choice is up to the parents. Presented in this way, parents often think their choice is between their child speaking English or communicating using signs that are not understood by most people in the society. Unfortunately, to date, most professionals do not realize there is another choice, a bimodal choice (i.e. using sign language while at the same time promoting English/speech development).
Some professionals explicitly frame the parents' choice as a cultural choice [68]. The child either grows up as a deaf person immersed among people who hear, or grows up like those deaf people they see signing on the streets or in the deaf programs they may have visited. The problem with this choice is that this choice is often based on a stereotypical view of deaf people and not on an adequate portrayal of well-functioning, well-adjusted deaf people who might also use sign language. Unfortunately, at this time, only a few medical professionals have the knowledge or training to give better advice. The result of this uninformed or misinformed advice is often unintentional harm to the child and family.
The vast majority of deaf infants (approximately 96%) are born to hearing parents, who often know very little about sign language or Deaf communities [69]. These parents are in a state of vulnerability, grieving the loss of a normally hearing child and fearing what the future may hold (or not hold) if their child cannot speak like a hearing child [70]. They might view sign as an inferior choice or a last resort [71, 72] and not fully understand that sign language is a human language with the linguistic complexity and expressiveness of spoken language. They might also fear their child will be stigmatized if they use a sign language [73]. Furthermore, they might be afraid of trying to learn a new language at their age [74]. In the absence of relevant information, many parents opt for the speech-only route because, without appropriate advice and information, they do not understand the risks of linguistic deprivation.
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