A Study Of Disability, Informed – Surrogate Consent, And Ethnocide
Glenn Hladek, University of Montana
The ethical debate regarding life-saving organ transplants no longer embodies the emotional content generated by the first successful transplant in 1955. The decision of life – no life, and the success of medical intervention has certainly muted that debate. The current ethical debate is directed at biomedicine’s involvement in quality of life issues such as gene therapies, surgery in utero, and the implantation of a device to stimulate the 8th nerve of born-deaf infants. These interventions are specifically directed to alter, eliminate, or correct non-life threatening conditions. This paper specifically addresses Cochlear Implants (CI) in born-deaf children, with emphasis on trait vs. disability, informed-surrogate consent and the possible demise of the deaf culture (ethnocide). An introduction to Deaf culture and Cochlear Implants (CI) provide a framework for later discussion of disability, proxy consent, and ethnocide.
Culture is defined as the ideas, customs, skills, and arts of a given people in a given period. A common language is generally accepted as necessary to share these aspects of the culture. The Deaf culture is a group of individuals, generally born-deaf, and who communicate with American Sign Language (ASL). The Deaf culture is both defined and bound by their deafness and their language. Members of this Deaf community regard themselves, their identity, and their interpretation of the world as the norm. They believe that deafness opens them up to membership in a community with it own rich history, language and value system rather than a disability that condemns them to a world of silence. The Deaf pride movement culminated during the Gallaudet student demonstrations in the 1986 “Deaf President Now” action. This demonstration provided the general public with its first contact with the concept of Deafness as a culture and not as a disability. Ninety percent of born-deaf infants are born into families of hearing individuals. The primary means of communication, education, affection, and the transfer of cultural information in hearing families is auditory-verbal.. The acculturation of deaf children into the Deaf culture does not occur at the knee of their hearing Grandparents, or around the dinner table of their hearing siblings and parents. The acculturation of these deaf children, instead, occurs at residential schools for the deaf, or later at post secondary programs for the deaf, at deaf churches, and deaf civic or social organizations. The hearing community defines the Deaf culture by its loss of a species-typical trait, hearing (a disability), while the Deaf culture defines itself by its unique visual language (heterogeneous trait) . This different perspective focuses the dilemma. It is not an ethical dilemma when adults make decisions regarding themselves about whether to have a CI or not. However proxy decisions, for infants, that effect their communication mode and their inclusion in a specific culture does have serious ethical implications.
Cochlear implants are a surgically implanted devices that provides electrical stimulation to the 8th Nerve. In hearing people, the 8th Nerve is stimulated by signals that are processed through the hair cells of the cochlea. In most profound hearing loss the hair cells of the cochlea have been destroyed, resulting in a loss of sensitivity, and a loss of frequency resolution. A CI produces tiny electrical currents that directly stimulate the auditory nerve fibers, bypassing defective or absent hair cells. Frequency resolution occurs for a CI patient because the implant filters sound into different frequency bands and these bands are transmitted to different electrode positions which then stimulate “high pitch” producing nerve fibers and “low pitch” nerve fibers. A born-deaf infant experiences auditory stimulation, that is different from normal hearing infants. Cochlear implant stimulated infants create their own catalog of auditory experiences.. It is the task of parents, siblings, teachers, speech-language pathologists, and audiologist to make this audible signal, presented to an infant with the neural plasticity to organize this novel sensory input, into meaningful language. The neural plasticity of the brain is significant and related to age. The primary language-learning years are 0-3 years of age. To implant a prelingually deaf child at a later age is doomed to failure. Members of the audiologic community have argued that it is in fact unethical to implant a prelingually deaf child at a later age because of the poor prognosis for the successful development of oral language (Rose). CI at a later age will not change or provide options; the child is and will remain a functionally deaf individual, even if some auditory stimulation is provided. A decision to wait to implant at a later age narrows dramatically the options to the child.
TRAIT VS DISABILITY
There is a long history of viewing deafness as a deficit condition. Aristotle said that those born deaf “become senseless and incapable of reasoning” (Carver). St. Augustine taught that the deaf were excluded from salvation on the grounds that they could not hear the world of God (Carver).. The Deaf community has struggled to remove the medicalization of deafness. They have protested the deficit concept of deafness and have worked to develop a healthy self-concept of deafness. Members of the Deaf culture celebrate their deafness, and many, if given the opportunity to hear, would choose to remain deaf because they do not see deafness as a disease or a disability, only as a difference. Padden and Humphries describe the Deaf culture’s perception as having a “different center” (Ramsey, pg. 81). Whereas hearing people work from the perspective that their hearing status is the norm, deaf people assume their deaf status is the norm. Each group is working precisely as members of a specific culture is expected. These different centers impact the way that each culture views the cochlear implant. Members of the Deaf culture view an attempt to make them into hearing individuals as discriminatory, and as some members of the Deaf culture have indicated, as an assault on their personhood. The hearing community, on the other hand encourages any attempt to move closer to their concept of center, which reflects their enthusiasm and general support for cochlear implants. The ethical conflict considered here arises when an attempt is made to change the center of an incompetent infant from one cultural group to another cultural group. The Deaf culture views the implantation of an infant as an attempt to assimilate the infant into a culture different from its birthright. Harlan Lane has argued that children born deaf to hearing parents are biologically members of the deaf community at birth, even if they are denied the opportunity to acculturate. They view it analogous to the removal of young Indian children from their homes and placed in Government sponsored boarding schools. Just as you can’t remove a child’s Indianess by changing his culture, Dr. Lane contends that you can not remove a child’s deafness, his birthright to the culture of silence. (Ramsey, pg. 82) Larry Stewart, a leader in the Deaf community has argued against the concept of a deaf culture. He notes that Deaf culture was not discovered, it was created out of political necessity. He believes the meaning of culture is so powerful and complex, that it can not be applied so narrowly to a group of highly diverse deaf American citizens. He finds the comparison of Deaf culture to racial or tribal minorities to be inappropriate. Acculturation is a process; one is not culturally Polish by virtue of his birth to Polish parents in the United States, but becomes culturally Polish by inclusion and participation in those things Polish. He states that deaf individuals lack one of the five critical senses. They are unable to talk on the phone, can’t go to the movies unless subtitles are provided, can’t hear music, can’t hear their children or grandchildren laugh or cry, and can’t get any job without having to consider how their deafness will interfere with the job duties. They find the creation a a culture based upon these deficits to be clearly nonsensical (Tucker, pg. 7). The Deaf communities concern regarding CIs is not unlike the disability-rights movement concern regarding the technologies of genetic testing. In both cases, activists argue that both technologies advance a form of discrimination by having a single trait stand in for the whole person. Rather than accept the person in his or her entirety, a single trait identifies the individual as needing intervention so that the person can be more “normal”, or can be labeled as too flawed to exist and not worthy of being born. In both cases the individuals that presently exist with these diseases or traits receive a message that disparages and demeans their lives. Additionally both groups are concerned that if genetic testing or CI were to become public policy, then funding for education, rehabilitation and public support for affirmative action for these disabilities will become problematic.
DECISION MAKING ON BEHALF OF MINORS
Consent is a powerful moral warrant. Informed consent, however requires cognitive capacities, such as the ability to be conscious of oneself as existing over time, the ability to appreciate reasons for or against acting, and the ability to engage in purposive action (Buchanan, pg. 78). Clearly infants don’t have the competency to provide informed consent. The absence of the capacity to make an informed consent must be provided by another. The decisions about the medical care of minors traditionally has involved the child’s parents and the state, with the primary responsibility being the parents’. These types of judgments rely upon “best interest” judgments, since substitutive judgments require a previous state of competency. The Deaf community contends that since the parents of most deaf-born infants are hearing they have no perspective upon which to base their decision regarding cochlear implants, that without intimate knowledge of the Deaf culture, hearing parents can’t make a “best interest” judgment. They maintain that hearing parents’ decision to implant deaf children without consulting the Deaf community renders the decision “ill-informed, ill-prepared, ill-advised, ill-founded, and ill-fated. They recommend that a member of the Deaf community join the parents and the state as interested parties to protect the decision from parental bias and ensure consideration of all possible alternatives. The warrant of proxy consent regarding the implantation of a CI is a serious one. The decision may pit two principle-based ethics, autonomy (concern for the parent’s right to decide about matters of their children) and beneficence (concern for the child’s quality of life). Dena Davis suggest a more appropriate construct of this conflict; parental autonomy versus the child’s future autonomy, or what Joel Feinberg has called “the child’s right to an open future” (Davis, pg. 9). Any decision that jeopardizes or narrows the scope of the child’s choices when she reaches adulthood would violate her autonomy, and thus violate her right to an open future. Lipson agrees when he says that while infants are clearly worthy of moral consideration, their moral status is one of potential autonomy. Any interference with the development of this potential autonomy is impermissible, and some would say we have a duty to aide in that development. Davis and Feinberg maintain that “best interest” decisions must have the child’s interest as an end. They would assert that it violates the Kantian principle of treating each person as an end and never as a means only, when a child is forced into either the parents’ notion, or the Deaf culture’s notion of the good life, without consideration for the child’s open future. To do so would deny that the child will someday exist for her own sake. The “best interest” decision is the one which provides the child with an open future, with important rights that need to be protected now, so that the child can exercise them later as an adult.
This section of the paper addresses three distinct areas for ethical analysis in the cochlear implantation of born-deaf children: 1) disability, 2)proxy consent, and 3) ethnocide of a culture. DISABILITY The basis for an auditory – verbal language system is auditory input. The development of an oral language system without auditory stimulation is an arduous task. The ability to hear adequately to develop an oral language system is shared by 99.9965% of the citizens of the United States. There are approximately 700,000 deaf individuals who do not hear adequately to develop this oral language system without assistance. Hearing is the necessary conduit for auditory stimulation that allows the development of the oral language system that unites a majority of the human community. Some members of the disability-rights community and the Deaf community advocate that we “choose who will be disabled”, that disability is a social construct. Most members of these two groups do not deny, however, that departures from species-typical functioning, foreclose some options. A lack of strength, or agility, or loss of vision , or a loss of hearing are “real” and not an artifact of any interaction with the environment. It is Adriene Asch who writes, “The inability to move without mechanical aid, to see, to hear, or to learn is not inherently neutral. Disability itself limits some options”(Parens, pg. S11). Society certainly does not view these inabilities as neutral. The promotion of a healthy life style for pregnant women, the support of public and private research for disabilities, and the inaction of legislation (ADA) demonstrate a commitment by society to moral equality. The individual with the disability is viewed as so valuable to our society that significant resources are expended to provide equal opportunity. It is not the person who is devalued, nor their contribution to society, for surely society would not commit resources of time if that were the case. It is the disability that is devalued, not the individual.
At birth, infants become members of the moral community, but are not yet moral agents. Until the infant does become a moral agent, others must make decisions for her, decisions made from the standard of the child’s “best interest”. The Deaf community has advocated that they be included in the decision – making process to balance the parental hearing bias. There is legal precedent for third party intervention in proxy consent, and courts have intervened with a third-party disinterested person to help make decisions for non-competent individuals. However, the inclusion of a deaf adult, advocating for the deaf culture does not prima facie reflect an unbiased, “disinterested” third party. Certainly information regarding the Deaf culture should be made available to the family, including the ramifications of inclusion into the Deaf culture. It is difficult, however, to imagine the Deaf cultures’ interest should supplant or be given equal weight to the parent’s decision regarding their child. It is generally recognized that parental autonomy to make decisions for and to care for their child should be free from outside interference. This freedom satisfies the child and the parental need for family integrity, continuity, and physical well being. The inclusion of contrary philosophical position that would jeopardize these family needs is not generally prescribed in family decision making and should not be a mandatory obligation.
The Deaf community proudly identifies their communities as cohesive. These communities develop because human beings group with other individuals who are “like” them. The Deaf community is exclusive as there are only 700,000 potential members. The Deaf community readily admits that many deaf individuals do not intimately know their biologic parents or other members of their families because of the communication difficulties. They rightly claim that their needs, interests, and cultural heritage are not known or necessarily shared by their genetic families. As Harmon Smith says, we are deceiving ourselves if we think we can educate and inculcate a child into another culture (deaf), and ever expect for that child to return to her biologic parents (hearing) without serious consequences to the family bond (Smith, pg. 54). It is a decision at infancy to select a finite community that doesn’t contain the child’s biologic family. And since enclaves of deaf individuals are generally not present in small rural communities, participation in a deaf community necessitates moving to or being close to some urban environment. The inclusion and participation in a community of “like” individuals narrows the community options. Hearing people, even thought they may never be accepted as members of the Deaf community can learn sign language and communicate over cultural lines. Members of the Deaf community do not have the same cross-over option.
Employment opportunities have been expanded for deaf individuals due to federal legislation and the advent of computers. The range of potential vocations, however, will always be inherently limited. It is difficult, regardless of the accommodations, to imagine a deaf individual being part of a surgical team, or functioning as an air traffic controller. It is unknown at this time if a pre-lingual CI will allow an individual to participate in these and other professions that emphasis auditory-verbal skills. It is known, however, that not to implant will certainly exclude them and limit their employment opportunities from jobs and professions that require auditory-verbal skills.
Marriages or long term romantic relationships generally develop with persons from our communities. The ability to communicate effectively is considered an essential in the marriage relationship, and it is understandable that a culturally Deaf individual would select a partner competent in ASL. Additionally there is the question of offspring. Most genetic deafness is carried on a recessive gene. This means to increase the likelihood of delivering a born-deaf infant is to marry another deaf individual with the same recessive gene trait. Potential marriage or relationship partners are often selected because of a communication system and the desire for deaf children. Both seem to further narrow the child’s right to an open future.
HARMS OF CI
The Deaf community has voiced concerns regarding the destruction of the cochlea during the implantation procedure, prohibiting the use of technology developed in the future. The cochlea is not destroyed for further CI developed along the current paradigm. Furthermore, the FDA allows for implantation of only one ear at the present time. The contralateral ear is available when new surgical techniques or new technology evolve and require an intact cochlea. The incongruity of the Deaf culture’s concern regarding the destruction of the cochlea is apparent to many. If their concern is that CI will be so successful as to eliminate a culture, then the destruction of the cochlea is irrelevant. If their concern is that improved surgical techniques will be developed needing an intact cochlea, they deny their argument that Deafness does not need a “fix”.
The Deaf culture’s concern regarding ethnocide appears particularly morally problematic; each deaf child is considered a means to the culture’s ends, the survival of the culture, and not the child’s own end. Thus, the deaf child exists to fulfill the culture’s hopes and dreams, not necessarily the child’s hopes and dreams. If all deaf-born infants are implanted and choose the hearing world, then it will be the demise of a culture. However, the autonomy of the individual ethically trumps the autonomy of the group. If the group or the culture radically infringes on the choices available to the child as she grows up, then respect for the individual requires support for the child, even if the choice will eventually result in the death of a group or culture. Parenthood is a balancing act of parental dreams and hopes for children and the realization that children will someday exist for their own sake. The child will have her own talents, interests, strengths, and weaknesses. Regardless of the complex reasons for being a parent, a primary responsibility is to recognize the child as an end in herself. Parents best fulfill this responsibility by providing the child with the support, skill, and knowledge necessary to avail herself of many open opportunities and thus maximize her chances for self-fulfillment. Any parental decision that closes the child’s right to an open future is not regarding the child as an end in herself. The selection of a community, a marriage or life partner, or a vocation strictly or primarily because of a single trait is inherently limiting because the trait is used to substitute for the individual. Cochlear implants or any other medical, genetic, or surgical techniques that provide for a more open future are not only morally permissible, but are morally encouraged.