Should children be given a cochlear implant before the age of majority?
The deaf community has been victim to many different controversies surrounding education, sign language, and the label of disability. The education methods of oralism and manualism were hotly debated by opponents and proponents for decades. The idea of teaching deaf people to be more like hearing people in order to fit into society was one of the major reasons for this debate. The idea that if people seemed less deaf they would be more widely accepted was the thinking. This debate continued from the 18th to the 20th century until the two systems were combined beginning in the 1960s.
The deaf have endured large amounts of persecution and have been the victim to many terrible policies with regards to education. It is hardly a wonder that the deaf community has in many ways become opposed to hearing people and has formed their own culture. One of the more glaring issues which the deaf have faced is that they are constantly victim to normalizing and science attempting to fix them. This has been an ongoing issue which is believed to be systemic of the nature of being deaf. Deafness for the hearing is an invisible handicap. The deficiency only becomes apparent when the deaf individual attempts to communicate, such as using sign language. Laurie Boggs clearly articulates this problem,
Deaf children looked “normal,” and the only way the deaf child could be identified as being handicapped was by an external show of his/her disability, i.e. the use of sign language or the wearing of hearing aids. No parent wants to admit that their child is different from “normal” children. (Gannon, 1981) In Marcia Forecki’s 1985 book Speak to Me! she writes of this fear of evident “handicap” when speaking of her child, diagnosed with a profound hearing impairment at 18 months of age, upon receiving his hearing aids: “Charlie’s’ handicap was now obvious to anyone, even without their trying to talk to him. I felt sick. I could not wrench from my mind the memory of a picture I had seen in a history book of a blind man begging during the Depression. He wore a placard around his neck, which read “BLIND.” My son now wore the indisputable proof of his abnormality. His sign read “DEAF” and it was just as repugnant to me as the blind man’s label.” (Boggs, 2007)
The problem that stems from this thinking is that people are inclined to believe that they can correct the problem by making changing or hiding the person's communication method, e.g., signing. This type of thinking has caused considerable debate on how the deaf should be taught and how they should act in society. The debate has raged into the 20th century because most hearing people continue to overlook the fact that people who are born deaf are born into a world that is normal to them.
At the center of these debates has always been the opposing belief of the deaf community and the hearing. The deaf community does not view deafness as a disability but as a cultural identity. In opposition to this thinking, the hearing view deafness from the standpoint of it being a disability (Crouch, 1997).
This argument has surfaced again with the recent advances made in hearing technology. The cochlear implant is a device that bypasses damaged or missing hearing apparatus. The device provides the electrical stimulation to the nerve fibers in the ear thus allowing for sound to be received. While this device would seem to be a huge benefit for many deaf people it has not been met with optimism and appreciation by the deaf community.
Deaf people have created a community that does not view itself as disabled and does not view deafness as a medical problem. As a result of this thinking, the deaf believe that the choice of having a cochlear implant is a choice of culture (Crouch, 1997). For this reason, deaf people should have a choice in whether or not to accept this procedure.
Allowing the deaf the choice of receiving a cochlear implant does not seem to be a controversial topic when it is an adult being given the choice. The true controversy centers on the implantation of the device in children. The deaf community views this action as a form of prejudice and bias against the culture and the child being forced to receive the device.
Those who oppose the use of cochlear implants do so for several reasons. These people challenge the supporters of cochlear implants by asking questions such as, “What is normal?” and “Do the quality and quantity of the benefits outweigh the risks involved?” … Doctors and parents tend to see the child as missing something and view the deafness as a disability that must be fixed to make the child “normal” or whole again. This attitude can have serious social and emotional implications (Stewart-Muirhead). A child who is told she is “broken” and needs to be fixed will forever see herself as less of a person because of her deafness (Delost & Lashley, 2000).
In opposition to this thinking, the medical associations view deafness as a disability and see it as a condition that needs repair. In a larger view, parents and proponents of the cochlear implant view the surgery as a means of providing opportunities in a variety of ways which the deaf do not receive.
The American Medical Association and the American Academy of Otolaryngology-Head and Neck Surgery recognize it as a standard treatment for profound deafness for children (“Cochlear Implantation”). The main concern of the cochlear implant supporters is for the deaf child to have access to the mainstream, or “normal” hearing world (Osberger 28) (Delost & Lashley, 2000).
There can be no doubt that the regaining of hearing opens the doors to many opportunities that could improve the lives of many people. Increased job, financial, and education opportunities are among the largest benefits that one would receive from having his or her hearing restored (Russell et al, 1999). The question is whether these benefits actually outweigh the risk and potential harm caused by the device?
The answer to whether the cochlear implant is beneficial to the recipient is a relative answer. Like most medical treatments the benefits and results vary from patient to patient. Some patients have a high degree of benefit while others receive less and in some cases, the surgery can make the problem worse.
Critics of cochlear implant research continue to point out the failure of researchers to distinguish between the success rates of children who were born deaf (prelingually deaf) and those who lost their hearing at a later age (Bonn 1836). Medical specialists misrepresent the facts to parents of prelingually deaf children in order to convince them that their child will be successful (Carver). Rarely do doctors tell parents that “success” does not always mean the ability to hear and speak (Delost & Lashley, 2000).
In fact, in many cases, the result of the surgery is nothing more than the ability to hear certain sounds and tones. This increased hearing is far from being ‘normal’ and often provides little benefit other than being able to distinguish certain sounds. Another point to the perceived benefit is that in cases where deaf children have some degree of hearing, the surgery will destroy this natural hearing. In these instances, if the implant does not work then the child will be left completely deaf.
There is also the invasiveness of the surgery itself. The surgery requires drilling into the patient’s skull for implantation and carries the normal risks of this type of surgery. As well, there is the risk of inner ear fluid leaks and infections. The recovery time for the surgery is also very long extending from weeks into months (Russell et al, 1999).
But beyond the risks of the surgery itself, there is also the change in lifestyle that must be considered due to the implant. Precautions must be maintained in order to avoid damaging the device. For example, recipients of the implant are not able to receive an MRI (Magnetic Resonance Imaging) because there is a magnet in the implant (Diane, 2007). There is also the problem of electrostatic discharge which can damage the device. In order to avoid this risk children must avoid playing in pits of plastic balls, plastic sliding boards, and with balloons.
While these risks and changes in lifestyle might seem acceptable for those children who receive a high degree of benefit, for the majority of children this cost does not seem to be worth the benefit. When one considers the risks and rewards from a logical standpoint there seems to be a bad pattern of thinking occurring. The whole point of the surgery is to return the child to a state of ‘normalcy’ or to increase the opportunities of the child by correcting the hearing deficiency. How is this goal being actualized when the child is now no longer able to partake in the same activities as other children? Children with implants must avoid swimming, contact sports, and a variety of other activities mentioned previously. This would seem to be a decrease in lifestyle rather than an improvement. Worse yet, most of these sacrifices are made not for complete restoration of hearing but on the chance that some hearing might be restored.
But beyond the benefits and deficiencies of the cochlear implant, there is a negative thought process underpinning the reasoning for the implantation of the device. This is the underlying view that there is something wrong with the child, a view which expressed explicitly when forcing a child to undergo implantation surgery. Deaf children like other children, do not view themselves as being abnormal until they are forced to think in this manner. By forcing children to undergo surgery in this manner this is exactly what is being expressed.
When one stops and thinks about it from this perspective the motivation for the implantation comes under fire. Why are the parents forcing the children to undergo this surgery? Why are they placing the child in a situation in which he or she may lose their cultural identity and may or may not benefit from the procedure? Proponents state,
Even a promise of only a minimal success level may be exactly what parents are looking for (“Who is Normal” 15). Therefore, medical professionals and many parents believe that the possible benefits the child could receive far outweigh any negative consequences (Delost & Lashley, 2000).
So are parents forcing the surgery because they are trying to help the child or are they trying to make themselves feel better? In many cases, the answer to this question falls back on the question of what is normal? Many parents, however well intentioned, see the surgery as a means to normalize the child. According to Delost and Lashley (2000) parents of deaf children often view the child as broken or missing some integral skill which makes them see deafness as a disability despite the state being normal to the deaf child. The desire to fix the child can create a situation in which the child views herself as broken or less than equal to other people. This can have damaging effects on the child.
This another point of contention in the debate in that there is a lack of scholarly study concerning the impacts of a cochlear implant on social and individual development. The benefits of the surgery are largely conjecture based on the assumption that having hearing or some level of hearing restored automatically translates into positive outcomes. There is little evidence to support this claim.
This assumption of a positive outcome to the procedure overlooks the loss of culture and community that occurs when the child is forced into conforming to the hearing world. This is an extremely important point raised by the opponents to the device. The return of hearing even partially can have a dramatic effect on how the child is perceived and accepted by the deaf culture.
The deaf culture is a difficult concept for most people to grasp because the culture is an ambiguous concept when applied in this manner. The problem from a hearing person’s standpoint is that the culture does not seem to be a true culture complete with the normal attributes of the definition. For instance, deaf people do not have a deaf god or a deaf cuisine. In fact other than the use of sign language, the cultural aspects are extremely subtle and invisible to outsiders. Much of the culture consists of a current of ideology and belief as transmitted through the medium of sign language. Dr. Bill Vicars of ASL University describes the culture in terms of language and personal feeling,
Deaf culture consists of the norms, beliefs, values, and mores shared by members of the Deaf community. We believe that it is fine to be Deaf. If given the chance to become hearing, most of us would choose to remain Deaf (Deaf Culture, 2012).
One can understand this culture as being language based. For example, the use of sign language has evolved into a form of folklore in which deaf people perform dramatic storytelling, sign language humor, signplay, poetry, and anecdotes (Padden, 2005). Like other cultures, many of these practices are idiomatic and therefore meaningless to those who do not speak the language or understand the ideologies being transmitted.
One of the distinct differences between the deaf culture and other cultures is the fact that the deaf culture is highly exclusive (Hladek, 2009). Within this culture, the hearing are seen as outsiders and are not allowed entrance. This belief is widely held in the deaf culture and hinges on being prejudicial. Even within the deaf community, this prejudice towards the hearing is seen as problematic.
“Deaf culture,” as a self-conscious political concept, is limiting rather than inclusive. It encourages a certain elitism, a snobbery. For example, in Deaf culture, a person is considered “strong-Deaf,” and is accorded respect, if s/he has Deaf parents. Since I am the child of hearing parents, and the only deaf person in my family, I’m not considered “strong-Deaf” enough by certain Deaf-culture purists. (Not strong-Deaf enough to be taken seriously, I imagine.) My status in Deaf culture is, in this view, lower than that of persons with Deaf parents and/or Deaf siblings (MSM Productions, 2012).
Although this example sounds harsh it is often the reality of deaf culture. Hearing people are seen as outsiders and those who decide to use a device such as the cochlear implant often find that they are no longer welcome in the deaf community. For children who are forced to undergo implantation of the cochlear implant, unless they have their hearing close to fully restored, they may find themselves ostracized by the deaf as well as by the hearing. For this reason, the removal of the opportunity to be a part of the deaf culture may be very damaging to the child since he or she will not have the support of a community of like-minded people who share similar beliefs and experiences.
A Different Direction
Due to the lack of consistency in the benefits derived from the implantation of the cochlear implant and the potential negative social and personal impacts, one must oppose the forced surgery of the device in children. If the device were able to fully restore hearing at least close to 100% the surgery might be acceptable. But the fact that the device has very limited benefit in most cases, the impact of the surgery does not seem worth the effort. As well, the lack of research on the benefits of the device should make parents wary of its use.
In a broader sense, the use of the cochlear implant seems to have an oppressive and damaging impact on the deaf community. The larger message that is being sent is the idea that deaf people are damaged and disabled and must be fixed. This same argument has been presented with almost every issue within the deaf community. It was not that long ago when deaf children were forced to learn to lip-read rather than sign because doctors and professionals felt that this would normalize them. Similarly, this practice undermined the education of the deaf because it was time consuming and not highly effective. The deaf have fought hard to be accepted as normal people and the idea of forcing the deaf to conform to an idea of normalcy undermines the progress and effort made in obtaining independence.
Currently, there is no benefit to forcing a child to undergo an invasive surgery that may or may not work. The desire to normalize the child by the parent may be well intentioned but has too many negative impacts on the child’s self-concept and self-esteem. This is not the fault of the parents because they are merely seeking to improve the life of their child. The desire to make sure that their child is afforded the opportunities that other people have is a noble idea and effort.
The fault lies in the medical community and in the professionals that have only given a partial view of the deaf child. The problem is that the medical community views deafness as a deficit and relates this idea to parents rather than explaining that children who are deaf have every opportunity to succeed.
The problem is also systemic in the fact that most deaf children are born to hearing parents. This fact is a problem because it creates a biased view of being deaf,
The problem is that 90% of deaf children are born to hearing parents. In many cases, these hearing parents may have never met a deaf adult. It is common for parents to be introduced to a number of audiologists and speech therapists when their child is first diagnosed with a hearing loss but to never be taken to meet a deaf adult so that they may receive the other perspective (Delost & Lashley, 2000).
The best course of action for parents of deaf children is that they should seek out help from the deaf community in order to make an informed decision. In this way, these parents can learn that deafness does not have to be seen as a disability but as a point of exceptionalism. It should also be noted that parents and children can find a balance of understanding in which deafness can be seen from a point of lifestyle and as diversity not unlike individuals belonging to ethnic or nationalities. Most importantly, the parents can learn that a child’s success is not dependent on being able to hear.
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