Refusing Cochlear Implants: Is It Child Neglect?

Australian Graeme Clark developed the cochlear implant, or bionic ear, in the 1970s. It does not amplify sound but directly stimulates any functioning auditory nerves in the inner ear. The Australian Government has promised a screening program of all babies for deafness from 2011. At present, only 70 percent children who might benefit are picked up early. The earlier deafness is detected, the more effective treatment can be.

Lobby group Deaf Australia says the implant "implies that deaf people are ill or incomplete individuals, are lonely and unhappy, cannot communicate effectively with others and are all desperately searching for a cure for their condition. [This] demeans deaf people, belittles their culture and language and makes no acknowledgment of the diversity of lives deaf people lead, or their many achievements."
Some deaf parents have denied their children cochlear implants. Is this right?

I have argued that deafness, in the current world, does constitute a disability (See Kahane, G. and J. Savulescu (2009). The Welfarist Account of Disability. Disability and Disadvantage. In (eds) A. Cureton and K. Brownlee. Oxford, Oxford University Press: 14-53 and Savulescu, J. (2001). "Procreative Beneficience: Why We Should Select the Best Children." Bioethics 15: 413 – 426.), albeit mild. However, I have defended the rights of deaf couples to select embryos they know will become deaf children (Savulescu, J. (2002). "Deaf Lesbians, 'Designer Disability', and the Future of Medicine." British Medical Journal 325: 771 – 773).

Nonetheless, refusing a cochlear implant is different to choosing a deaf embryo. In the latter case, no child is harmed. No child is made worse off than he or she would otherwise have been. But when a couple deny an existing child a cochlear implant, they deny that child the opportunity to hear speech, sound, music and to participate in the dominant culture, as well as being able to participate in a signing community. They make that child worse off.

This is analogous to a deaf couple with a hearing child who, wanting that child to be like them, deafen that child. That would be child abuse.

But denying a child a cochlear impact can have a similar outcome. It is a neglectful as denying a child with an amputation a limb prosthesis, on the grounds that the child can walk well enough on crutches.

In the case of competent adults, we can leave it to them to decide for themselves whether they have a cochlear implant or remain deaf, or even if they choose to become deaf. I have vigorously defended the liberty individuals to make controversial choices (see Savulescu, J. (2007). Autonomy, the Good Life and Controversial Choices. The Blackwell Guide to Medical Ethics. R. Rhodes, L. Francis and A. Silvers, Oxford:  Blackwell Publishing: 17- 37) . But when it comes to parents making choices for their children, there are two plausible principles. Firstly, the  intervention must plausibly be in the child’s interests. In this case, the use of a cochlear implant is likely to make a child’s life go better than remaining deaf.

Secondly, we should protect the child’s right to decide for herself. In this case, being able to hear has one advantage over deafness. The hearing can easily become deaf, while the deaf cannot easily become hearing later in life. So a child given a cochlear implant could always choose to have it removed later in life, or turned off somehow. A child, unhappy with the hearing culture, can reject it as an adult. She can be made deaf. But a deaf child cannot easily hear later in life.

To my knowledge, no hearing adult has ever freely chosen to become deaf. But it would be easy to achieve. So the cochlear implant affords the deaf child an extra option: to be deaf or hearing later in life.

Both respect for liberty/autonomy and beneficence argue in favour making the provision of cochlear implants a legal requirement.

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9 Responses to Refusing Cochlear Implants: Is It Child Neglect?

  • Dennis Tuchler says:

    Mr. Savulescu: Your post suffers from excessive rationality.

    A large number of deaf people have made a cult of deafness. A deaf child of deaf parents is “deaf of deaf” and therefore of high status. Giving a deaf child the ability to hear is a direct attack on this deaf culture because it deprives it of a member.

    The claims of representatives of the deaf community that giving a deaf person a cochlear implant casts aspersion on the worth of deaf people, especially with respect to their achievements in communication, etc. should be seen in that light. They are defending a culture against defeat. Compare the anger of Jews in Israel at Christians who seek to persuade Jews to become Christians. Compare the Muslim rule that one who converts from Islam to another religion should be killed.

  • Francesca Minerva says:

    Mr Tuchler,
    it’s not completely clear to me if you are just presenting possible objections to this post or if you agree with arguments you present, anyway

    1) the simple fact that a large number of deaf people have made a cult of deafness doesn’t mean they have a right to impose deafness to other people (their own children included). If someone comes and cuts my ear (against my will) in order to make me deaf and able to have this “high status” you are talking about, should I be grateful? I don’t think so.

    2) Assuming there is this culture of deafness which would be damaged if deprived of a member, shouldn’t the members of this culture allow other members to leave the group, if they feel like it? Belonging to a culture should be a free choice, not an imposition.

    2)I don’t see any similarity between religious cultures and deaf culture, if you are a christian you can become atheist or anything else whenever you want it. If you are born deaf, it’s not easy to be able to hear. This cochlear implant is in fact more efficient if used since childhood. On the contrary, if you can hear, you can later decide to become deaf, if you really want it.

  • Mr Tuchler: It is not clear how giving a child a cochlear implant casts aspersions on the worth of deaf people, or diminishes their achievements, or even threatens their culture. This is conflating the value of a condition with the worth of a person. We do not imply anything about the worth of people with manic-depression, or their achievements, when we develop treatments for manic-depression. The only implication is that manic-depression as a condition is bad. Of course, some manic-depressives refuse treatment and value their condition. This does not imply we should not develop treatments, or administer them to children.

    Your claim that there is a cult of deafness is important. Competent adult may be free to join or be members of cults. But children should not. When a child who has experienced both hearing and deaf culture reaches adulthood, she should be free to become deaf, if she chooses. But children should have a choice and that choice is, at present, only afforded by cochlear implants early in life.

    Your analogy with religion is interesting. The same principles may apply to religion, that is, that children should not be indoctrinated into religions, especially religious cults. When they are competent adults, perhaps they can be free to decide for themselves. Children should be as free as possible for as long as possible in their very brief childhood.

  • Dennis Tuchler says:

    As to casting aspersions — that comes from representatives of “the deaf community” who are cited in the main post, by Julian Savelescu:

    ‘Lobby group Deaf Australia says the implant “implies that deaf people are ill or incomplete individuals, are lonely and unhappy, cannot communicate effectively with others and are all desperately searching for a cure for their condition. [This] demeans deaf people, belittles their culture and language and makes no acknowledgment of the diversity of lives deaf people lead, or their many achievements.”‘ I can see their point. Another good example is the deaf community in the deaf school in DC, who seem to claim a superior status or at least a fully able status because of their deafness. That’s where I got the “deaf of deaf” designation.

    I don’t see the difference among cults (I include religions and political ideologies) in their insistence on self-preservation and self-validation. Keeping children in the cult is no different from deterring adults from leaving the cult on threat of death (or loss of family contact or inheritance or financial help) or from prohibiting anyone from trying to persuade anyone from leaving the cult. In all cases, the members of the community or cult deny the individual essential freedom for the sake of the preservation of the pride of and numbers of the community.

    I do distinguish between those who can afford implants and those who cannot. That’s because I tend to libertarianism and therefore individualism (an aside: I’d like to hear from the posters on this blog on the subject of individualism and others’ poverty or lack of opportunity). But I am in favor of (and would support) groups that band together to finance implants and concomitant medical care for the poor. I also accept the idea that some people might want to remain in a disabled condition in order to maintain friendships and their own membership in what is for them a nurturing community. They give up individualism for extreme communitarianism. I think they give up too much but … Such people also tend to put emotional pressure on others to remain in the community, and threatten ostracism from friendship and family ties to those who leave or those in the community who maintain ties with those who leave. This is just another aspect of communitarianism.

    An interesting final question: In a relatively free and individualist society such as that in the USA and UK, how should a court handle a complaint of neglect by a parent who refuses to give a deaf minor in his or her care a cochlear implant? Should the court consider putting the child in a foster home for the child’s protection? Putting it up for adoption?

    I suppose an analogous situation occurs in divorce, when the fight for custody includes a claim by one party that the other is unfit because he or she refuses to allow a cochlear implant. Should that argument be given weight?

    Recall that our social systems value both individualism and the sanctity of the family, deferring to the custodial parent on most matters involving the welfare and education of the child. That deference to the family is seen by many as a defense against a powerful government.

  • souggy says:

    Urgh… here’s an interesting counter-argument.

    In the world of bioengineering, scientists are figuring out how to regrow ears and cilia. However getting cochlear implants destroy the inner ears. I recall a doctor telling me that if I decide to get a cochlear implants, I would not be eligible to receive gene therapy or stem cell therapy to regrow the cilia I have lost in my ears since the cochlea would need to be intact for the therapies to work. It is very well possible to see human trials for regrowing cilia within the next decade or two.

    So would it be neglect to deprive children of that future by giving them CIs? I would certainly think so. Something to think about… even if you are not culturally Deaf.

  • Heather Bradshaw says:

    Perhaps you’re not being speculative and rational enough Julian?

    Cochlear implantation is a major and tricky operation with a number of risks including long term increased risk of meningitis, damage to taste nerves and facial paralysis. This last is of particular concern to some deaf people as in BSL the face is an important part of the signed language. Deafness does not involve, per se, medical risks. Most people compensate adequately for lower hearing with increased vigilance. Deaf people live in cities, ride bikes and drive cars with excellent safety records. (Compare followers of the iPod cult.) Deafness is not life threatening. CI is.

    Cochlear implantation does not restore hearing or give speech ability. The new data input to the brain can feel as difficult to interpret into language as someone ‘touching your brain’ to quote a respondent of mine. Some people do gain great benefit. But they do not instantly become non-deaf.

    Perhaps you should posit a technology that would, with few medical risks, give hearing and speech ability equivalent to that of never-deaf humans? Then your argument that withholding this would be child neglect would seem more convincing, at least to me, and probably clearer to all.

    As it is, the major risks of CI combined with the many hours spent in therapy both in hospital settings and at home throughout childhood, and all the resultant opportunities for play and normal social development that are lost, seem in themselves to risk considerable harm to the child’s development for a very uncertain benefit. Few CI users are able to benefit fully from equal access to school or work opportunities with no further support.

    Being very rational about it, hearing adults can no more become deaf than deaf adults can become hearing. Neither culture considers it normal for members to have had a childhood in the other culture. They are not immigrant based cultures! You cannot be Hearing-Deaf like you can be German-American. Hearing people might become hard of hearing, or deafened. But not deaf, let alone Deaf, because they cannot go back and re-live their childhoods without hearing. These terminological distinctions and different experiences matter to the well-being of those living the situations and hence to the ethics of the matter.

    Healthy hearing adults do sometimes want to lose their hearing in order to fit in better with deaf or Deaf culture. They may have married in to it or admire the beautiful language and art forms, value the silence or the particular quality of human relations produced by a visual communication medium, or they may have less admirable motives. Deaf people have a sign for them which translates as ‘Deaf Wannabees’.

    As for the divorce case, of course this should be a factor, but it is the parent who wants to put the child through such a traumatic operation to make it more like themselves or their culture who I think should be considered unfit. The many hours of therapy and care afterwards would also be a strain on a single-parent family perhaps requiring the court’s attention. The matter should depend on very fine judgements, preferably with the input of the child, about which environment will afford most opportunity for a normal, fully communicating parental relationship, to build human relationship skills essential for well-being, with support to achieve maximum educational success through whatever medium is most effective for the child. Sign language develops the brain’s linguistic and grammatical ability very effectively when taught by native speakers and used as a mother tongue. Other languages can then be learnt as second languages. The route to the written language is what is most important in today’s electronic, text-based world.

  • Michelle, Mother of Bilaterally Implanted Child says:

    As a parent of a very successful bilateral implant user, I have to disagree with the idea that families choosing not to have their child implanted constitutes neglect/abuse. First each child is a distinct individual. Deafness is renown for not fitting neatly into a one-size-fits-all pigeonhole, thereby complicating any decision making process with a deaf child. Secondly, even in cases where the child in question is an “ideal” candidate, the enormous amount of work on the part of a family and support network to optimize use of an implant in a young child simply cannot be legally mandated. It would be like society insisting that all obese people be equipped with bicycles. As anyone who has ever attempted to change their eating/exercise habits can affirm, this requires consistent effort on the part of the individual. The mere ownership of a bicycle will not change one’s body mass index. The much greater problem facing parents of deaf children today is not the minority of deaf parents who believe in raising their children “naturally,” but rather the larger number of parents who would to anything to get access to this technology for their children, but do not have the opportunity due to their country of residence or financial ability etc. Related to this is a world-wide lack of supportive services for the 5-6 years following the 2-3 hour surgery. Parents who are truly abusive or neglectful will exhibit signs beyond the refusal of an elective procedure. Furthermore, removing the decision making from parents is likely to artificially distance them from their child, ensuring a greater probability of social and communicative difficulties for the child’s future. Let’s invest in making this accessible to those who want it first, and ensuring that those who don’t are making genuinely informed choices second.

  • SweetMind says:

    This is how i strongly feel. This is not freedom for Deaf babies/children’s rights.

    It is one thing to allow a person to choose to use an auditory device, but i see that it is unfair to decide for any individual to have a surgery that changes their physical properties. Once a person is mature enough to decide to have a CI surgically implanted, the decision should be made. To have a parent/guardian etc.choose this for a child is ridiculous. Why should it be ok to force a person into a surgery that they may rely on for their entire life.

    Once a child has become accustomed to these devices it is something that they expect to have for the rest of their life. If the device fails or does not continue to work in the same way for their entire life, then they no longer can use what they have been expected to rely on. This is totally unfair to any child or adult. If they have the choice to decide whether to use an auditory device or not then they can make that decision for themselves. It is wrong to force anyone to depend on something when naturally they are not going to have that. Children cannot make that decision. They should have the choice to decide on adapting their physical properties on their own. This should not take place unless they have been fully educated on ALL of the possibilities…positive and negative.

    If a child relies on the auditory device and then it suddenly isn’t working anymore, then it is something that they have no choice but to have taken from them. These surgeries are not inexpensive. It takes money to maintain these devices and not all people are able to keep up with this. What happens when a child decides that they do not want to utilize this technology?

    It is wrong to force a person to rely on something each day, when naturally they may be better off without a device being implanted into their bodies. Insurance does not cover a CI removal. If a person chooses that route then more power to them,but it is not an issue that should be decided by a person that will not have to live with it. The person that is getting a surgery of this type or any other surgery should be allowed to choose for themselves. It is something that will have impact, whether positive or negative, a person for the rest of their life.

    By forcing an individual into a life altering procedure it is the same as saying you are not “good” enough the way that you were born. You must change physically for you to be accepted by the real world. Is this really the impression we want to make on deaf children.

    It is a huge put down to deaf childrens true identity. People must have a choice, it is only fair! We should appreciate the differences in all people. If we were all the same, then the world would be a very boring place.

    Therefore we have the right to maintain the status we were born with…people need to learn to accept that. Any adaptation that needs to be made should be made within the faultfinders, not the children. Acceptance is KEY! Need I say more?

    “Tell the mothers I said, “Don’t try to change your child; you are the adult, you bear the burden of change” – Harlan Lane Thats what it needs to get through your head.

    Seeing as how there are more cons than pros to getting a CI,( as such stated in other topics), It is more responsible to NOT implant a child. You dont need to hear to be alive. And if a d/Deaf child is not good enough for you then you need to reconsider your morals and prejudices. Like it, love it, or leave it alone.

    Thank you!
    Sweetmind

  • Deafie says:

    Deafness isn’t what most people imagine. It’s about language and feeling good about oneself. I’m a successful, happy deaf person who used to be hard of hearing. Being hard of hearing was much worse than being deaf! Sign languages probably predated spoken languages (notice how we all gesture when we talk). Parents who choose cochlear implants for their kids should be very careful about the meaning for the child: are you telling her that she’s not good enough the way she was born? Being deaf isn’t a tragedy–I have a million happy deaf friends. Not having fluent language is a tragedy, and happens all too often when people get the idea that a deaf kid MUST talk and use her parents’ language rather than being allowed to have the one that works for her. Most people with opinions on deafness (including every otolaryngologist on earth, as far as I can tell) don’t know any deaf people–so they’re really reacting to their fear of becoming deaf themselves, rather trying to understand what a deaf person’s life is really like. It’s a self-centered viewpoint. Examine yourself, and leaves us deaf people alone!

    Deafie

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