«Sally Patton UNITARIAN UNIVERSALIST ASSOCIATION BOSTON Copyright © 2004 by the Unitarian Universalist Association of Congregations. All rights ...»
The members of this group reside in the United Sates and Canada, have inherited their sign language, use it as a primary means of communication among themselves, and hold a set of beliefs about themselves and their connection to the larger society. We distinguish them from, for example, those who find themselves losing their hearing because of illness, trauma, or age; although these people share the condition of not hearing, they do not have access to the knowledge, beliefs, and practices that make up the culture of Deaf people.... This knowledge of Deaf people is not simply a camaraderie with others who have a similar physical condition; [it is] historically created and actively transmitted across generations.2 How people label themselves usually reflects either their identity with the Deaf community or how their hearing loss affects 202 Welcoming Children their ability to communicate.3 For instance, the term hard of hearing is sometimes used to describe people with mild to moderate hearing loss who can use their hearing for communication purposes. This term can also refer to deaf persons who do not have or do not want to have a cultural affiliation with the Deaf-World.
Discussion Throughout most of history, deaf people have been met with neglect, ignorance, and contempt. Deafness was seen as a disgrace, and children who were born deaf were thought to be defective.
Teaching them to speak was considered of the utmost importance because the use of manual gestures was seen as a lower form of communication.
Because they could not hear or communicate, deaf children were thought to be incapable of thinking and reading. Many were considered mentally retarded. Thus, the term deaf and dumb conveyed the prevailing impression that deaf people were incapable of reasoning and learning.
Understanding the philosophy of the Deaf-World is important for interacting with Deaf people. Most of the information that follows is from A Journey into the Deaf-World, by Harlan Lane, Robert Hoffmeister, and Ben Bahan.4 These authors represent the diversity of people belonging to the Deaf-World: Lane is a specialist in the psychology of language and a professor and researcher of Deaf history and language, Hoffmeister is a professor of Deaf studies and the son of deaf parents, and Bahan is a Deaf scholar in ASL linguistics and a storyteller.
An estimated one million people are part of the Deaf-World, a minority group that possesses a unique language (ASL) and culture. The larger and more heterogeneous population of deaf and hard-of-hearing people that exists outside the Deaf-World is estimated to be about twenty million in the United States. This population communicates primarily through spoken language.5 Members of the Deaf-World are generally born into it, possess a sense of Deaf culture and history, use ASL, and are deaf.
203 Deafness and Hardness of Hearing However, people who are hard of hearing and speak well enough to be understood but choose to use ASL and identify with Deaf culture can also be members. The hearing children of deaf adults (called codas) can also be members of the Deaf-World. Because of their facility with ASL and participation in the Deaf-World, many codas become interpreters and serve as bridges between the Deaf and hearing worlds. The hearing parents of deaf children who are fluent in ASL can also become members of the Deaf-World.
The range of deaf people’s ability to use ASL varies. Some are fluent and some are not; some are better at signed English than at ASL; and some are just naturally better at signing. However, they all recognize ASL as a symbol of their identity and culture.
Deaf culture is primarily passed down through the network of residential schools where Deaf-World members acquire their shared language and culture. As explained by Lane et al. in A Journal into the Deaf-World, The importance of place for Deaf people, and the primary role of the residential school as this place, are reflected in several facts about Deaf culture, Deaf introductions, as we have said, require stating one’s school. The Deaf World favors voluntary separation for Deaf children in residential schools and is bitterly opposed to mainstreaming most Deaf children in local hearing schools. Deaf people have mounted aggressive campaigns to block the closing of residential schools where this has been proposed, for example, by advocates for children with disabilities. Deaf ties formed at school are commonly lifelong.6 Deaf culture is also nurtured by Deaf clubs, which exist in most major cities for acculturation and socializing. Together, residential schools and Deaf clubs have helped to end the intense isolation experienced by many deaf people.
Because ASL is not a written language, the heritage of the Deaf-World has been passed down through storytelling. Poetry, legends, stories, drama, and humor have all been relayed face to face—in recent years, through a resurgence of Deaf arts. There is 204 Welcoming Children power in the rhythmic images of Deaf poetry and grace and beauty in the movement of Deaf drama. Deaf sculptors and other artists display their creativity with visual themes of the DeafWorld. Arden Neisser describes the visual strengths of deaf people
in The Other Side of Silence:
Before oralism defined deafness as failure to speak, failure to hear, failure to create literature and music, the educated deaf person was associated with positive talents and heightened visual sensitivity. Deaf people are, in fact, very visual. It may be less a matter of compensatory talent (a popular theory) than a practiced skill.... The deaf are interested in many things, including poetry, but seem especially involved with almost every activity that can be described as visual and/or spatial.7 The Deaf-World’s identity as a linguistic and cultural minority stands in sharp contrast to the hearing world’s view of deaf people as being seriously disabled or handicapped. In the Deaf culture, the hearing world’s prejudice, not the condition of deafness, is seen as the handicap. The Deaf agenda also differs from the agenda of most other disability rights groups, whose primary focus is the acceptance and integration of people with disabilities into the classroom, workforce, and community. As described by Lane et al., School integration is anathema to the Deaf-World. Because most Deaf children have hearing parents, they can only acquire full language and socialization in specialized schools, in particular the prized network of residential schools.
Whereas advocates of people with disabilities recoil in horror at segregated institutions, many Deaf alumni of residential schools return to their Deaf alma maters repeatedly over the years, contribute to their support, send their Deaf children to them, and vigorously protest the efforts of well-meaning but misguided members of the disability rights movement to close them down. These disability advocates fail to take 205 Deafness and Hardness of Hearing account of language and culture, and therefore of the difference between imposed and elective separateness. Where people with disabilities cherish independence, culturally Deaf people cherish interdependence. People with disabilities may gather for political action; Deaf people traditionally gather primarily for socializing. Indeed, Deaf people marry Deaf people ninety percent of the time in the U.S.8 The Deaf-World does support the disability rights movement because both groups are struggling for control of their own destiny. However, the Deaf-World does not want to be subsumed under the category of people with disabilities.
Ministering to Families Before a child is diagnosed as deaf or hard of hearing, the parents usually sense that something is wrong. Ignorance about deafness and the discounting of parents’ concerns can lead to late diagnosis.
Diagnosis can also be delayed when the child has some residual hearing and responds to loud sounds, such as thunder or pots banging. Regardless, when the parents are concerned, they should seek professional testing.
Once a diagnosis has been made, the parents are likely to react with shock and denial followed by anger, guilt, depression, anxiety, and fear, whether the child is born deaf or loses his or her hearing later in life. Hearing parents may find it painful when they recognize the difference between themselves and their deaf child. In contrast, most deaf parents who give birth to a deaf child are sad that their child will have to face the challenges of living in a hearing world but also joyful because the child will be part of their world.
After the parents accept their feelings about their child’s deafness, they can begin to cope with the overwhelming amount of information that is available and make the decisions that are best for their child and their family. They must realize the importance of 206 Welcoming Children their role in preparing their child to exist in a hearing world. Paul Ogden, a professor of Deaf studies who is also deaf, writes, By its very nature, deafness limits access to sound and speech. But in the hearing world, sound and speech are only means to ends; they are communication routes to other people. By blocking access to these connectors, deafness has profound impact on your child’s social development, interfering with the relationships that otherwise would form naturally and grow in complexity as the child matures. It is in this area—the fostering of healthy relationships—that you will function most importantly as teacher, informing your child about the ways people interact in our culture; in other words, the where, whats, whys, when, and how of communication.9 Everyone agrees that communication is important for children, and communication is much more than the exchange of words. It is about sharing and being in relationship with others.
Choosing the best form of communication to use with their deaf or hard-of-hearing child is a critical decision for parents. Ideally, the form they select will provide an easy flow of information among all family members, both hearing and otherwise. They should consider the challenges of learning a new language themselves. (Learning ASL is similar to learning a foreign language, such as French or Russian, with additional visual and physical challenges.) Making this decision about communication, however, places parents in the middle of a conflict between two opposing approaches: the oralists and the manualists.
The oralists advocate for teaching deaf and hard-of-hearing children solely through spoken language using techniques such as speech, speech reading (or lipreading), and the amplification of residual hearing with hearing aids and other technological devices, such as cochlear implants. Purists of the oralist method do not allow the use of any sign language or gestures.
The manualists advocate teaching deaf and hard-of-hearing children with sign language. Some also argue in favor of combining sign language with other oral forms of communication, 207 Deafness and Hardness of Hearing although sign language is taught first. Given that each approach has its zealots, hearing parents can easily become overwhelmed trying to sort out what is best for their child.
Children who lose their hearing after acquiring speech will have greater options for communication than children who are born deaf or become deaf as infants. The parents’ decision will also be related to the level of residual hearing their child has. Parents of children with mild to moderate hearing loss are often drawn to the oralist approach to communication. However, children who are profoundly deaf will likely have extreme difficulty learning to lipread, and only a small number will develop speech that is intelligible to anyone outside their family.
An issue that has both refocused and re-energized the debate between the oralists and the manualists is the use of the cochlear implant: an electronic device that is implanted in the ear and converts sounds to electric impulses. The implant does not restore regular sounds but provides beeps, buzzes, and whistles that can then be encoded with meaning.10 The use of implants and other technology is advocated by those who support the oralist approach and by most in the medical community. However, advocates of the manualist approach, including organizations of deaf people such as the National Association of the Deaf (NAD) and the World Federation of the Deaf, question the benefits of implants and vigorously protest their use.
Not only do they oppose subjecting children to the surgery involved, but they also object to the implication that deafness is a disability and needs to be fixed. Regardless of the controversy, the use of cochlear implants is becoming more and more popular with hearing parents, who want to give their children any benefit they can provide. Thus, some people feel it is irresponsible to use cochlear implants and some feel it is irresponsible not to. The issue has refocused and re-energized the debate between the oralists and the manualists.
American Sign Language (ASL) is a manual, gestural, and facial mode of communication and has its own syntax and vocabulary.
ASL is the fourth most common language in the United States.
208 Welcoming Children Manually coded English consists of signs that represent English words and are arranged according to English grammar and syntax.
As such, it is not a separate language. There are basically three forms: signed exact English (SEE), signed English (SE), and English-based signing, sometimes referred to as pidgin sign English (PSE).
The obvious advantage of using manually coded English is that it can be used simultaneously with spoken English. Thus, most hearing parents who choose manualism select manually coded English to learn to communicate with their child. Beyond that, they will usually choose between two education philosophies called simultaneous communication (SimCom) and total communication.
SimCom employs the simultaneous use of speech and signing, which involves SEE, SE, or PSE. According to proponents of this approach, “Providing both the oral and signing options simultaneously allows the child to learn language in a way best suited to his or her needs while developing communication skills to function in the hearing world.”11 Total communication promotes the use of all possible methods of communication, including both the oralist and manualist approaches, and seems to be most effective in teaching deaf and hard-of-hearing children. Even so, critics voice concern that children who are bombarded with all types of communication may fail to master any.