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by David Luterman
There is an ancient Chinese curse: May you live in interesting times. I am not sure whether I have been cursed or blessed to have been professionally active at this very interesting time. When I began my clinical work as a diagnostic audiologist in 1960, the outlook was rather grim for a newly diagnosed child with profound hearing loss. Diagnosis was usually parent-initiated at around 18 months, after the parents struggled with physicians who were reluctant to make a referral and who assumed erroneously that they could test the child's hearing informally. Many physicians also assumed that the parent was being overly anxious. Thus, many parents, by today's standards, got a late start.
As an audiologist, the only weapon I had in my arsenal to help the child was a clunky body aid with limited power that barely reached the degree of amplification needed by the child to detect sound. I later learned, to my dismay, that these children would ultimately reject their hearing aids as limited as they were. I also had minimal resources for referring families for treatment. Schools for the deaf would start a pre-school program at age 4, but few programs were available. Many children required residential placement, which was exceedingly hard on the families. I could refer for individual treatment to a very limited number of clinicians, usually teachers of the deaf, who would be willing to work with very young deaf children. Treatment was usually restricted to one or two hours per week. In Massachusetts it was child-centered and visual-oral. That is, the child was taught to speechread and parents were instructed to hold objects up to their face and to wait until they had the child's attention. The language used was very limited and stilted with drill on specific word categories. Almost all of the children, regardless of their degree of hearing loss, went to a school for the deaf. The efforts by parents, teachers, and children were generally prodigious. The net result, though, was dismal. We all knew there was so much unrealized potential locked in the child which, despite our best efforts, was not being reached. Statistics compiled in the 1960s and 1970s indicated that graduates of schools for the deaf were barely able to read at a third grade level and their speech was usually not intelligible; as a consequence, vocational opportunities were also very limited (Babidge, 1965).
In 1965, I started a parent-centered program for very young children who were deaf, prompted in large part by my observation that teachers and programs only paid lip service to the notion that parents were an important component of treatment. In reality, parents were generally relegated to an observer role and a passive recipient of teacher expertise. Parents were also rarely given the opportunity to talk about and work through their complex feelings around having a child who was deaf.
The program I started was patterned after the pioneering efforts of the Tracy Clinic in California, which had begun a parent-centered model in the 1950s. The nursery for the children in our program began at 18 months, as this was generally the age of detection. Individual treatment was visual-oral with active parent participation as both the observer and as the assistant in actually doing treatment. A parent support group was a key component of the program and this enabled parents to talk and work through their feelings about having a child with hearing loss. We fitted binaural body aids on the children, and parents who were skilled in sewing made vests that held both aids. We did a great deal of "auditory training," but the general approach was to encourage a visual orientation to communication.
With intense parental focus and more emphasis on use of hearing we were able to get a somewhat better result than was prevalent at the time. We measured our result by the number of children who were mainstreamed. This was generally limited to children who were hard of hearing. Children with a profound hearing loss still did poorly in terms of their speech and language skills and almost all of them eventually went to a school for the deaf. Educators of the deaf developed an antipathy for the visual-oral approach as several additional studies indicated minimal progress in eliminating the negative educational consequences of deafness (Quigley & Paul, 1986).
In the 1970s, two divergent approaches to educating deaf children emerged. Doreen Pollock and others began to advocate an auditory-only approach to treatment (Pollock, 1970). Her approach was called acoupedics and was a forerunner of the present auditory-verbal method. Her argument was essentially that the child who was deaf did not need visual training since this sense organ was normal; instead, treatment should focus on the impaired hearing sense in order to engender normal language development through aural means. Deaf children were provided with powerful behind-the-ear aids, which were then coming on the market, and parents were instructed to minimize visual cues and maximize auditory cues. In some extreme approaches, parents and clinicians would cover their mouths while talking. The hand cues were intended to signal the child to listen intently and used only when necessary before being reduced (Estabrooks, 1998).
Almost at the same time, a second approach emerged that sought to minimize the ambiguity of visual speech by introducing manual assistance to speechreading and audition (Mindel & Vernon, 1971). These approaches took the existing American Sign Language (ASL) used by the Deaf community, and recast it into English word order, adding signs where there was no sign equivalent to English. This approach became known as total communication and parents and teachers were required to learn a manually coded English system (several were developed at the same time) and to speak and sign simultaneously. Children were also encouraged to use their hearing aids.
A third method also emerged during the 1970s known as cued speech. A method developed by Orin Cornett at Gallaudet University used hand signals that gave phonetic information as opposed to the linguistic information provided by the total communication approaches. Cued speech has never quite made it into the educational mainstream, although it still has passionate advocates and there are a few programs that continue to use it. With the advent of these new communication methods, teachers of the deaf defected almost en masse from the visual-oral mode.
The 1990s saw the emergence of the Deaf community. Feeling long oppressed and shut out of the educational process, the Deaf community rebelled. The rebellion, riding on the heels of the civil rights movement, was centered on the selection of a president for Gallaudet University. A hearing president was chosen by the board of trustees and the Deaf community rebelled and demanded a deaf president. They ultimately prevailed. This was a watershed event for the community. In a similar way, they sought to prevail over the curriculum by proposing a bilingual/bicultural (bi/bi) mode of educating children with hearing loss. Within this model, deafness is seen as a cultural difference as opposed to a disability. Proponents wanted children who are deaf to be treated as a cultural minority that should first be taught ASL and then English as a second language. Speech and the use of residual audition were secondary to Deaf identity and culture as exemplified by the use of ASL (Johnson et al., 1989). This approach seemed to gain rapid credence and was accepted by many educators in schools for the deaf. It flowered during the 1990s and many schools for the deaf converted to a bi/bi approach.
I realize writing about the methodology issues in education of the deaf is fraught with peril, as these issues often take on a quasi-religious significance. I am trying to be descriptive, as opposed to prescriptive. My own view, based on 40 years of observing children who are deaf, is that a variety of approaches are needed and that the child will tell us which is the best way for him or her to be taught. Ongoing research needs to be conducted so that we can match the child to the methodology sooner. At the present time it is more trial and error.
I never thought the bi/bi could be successful on a large scale because it essentially bypassed parents with normal hearing. These parents could seldom gain sufficient fluency in ASL to teach their children. Contrary to what the Deaf community believes, the "natural" language of a deaf child of hearing parents is English, not ASL. The bi/bi approach is also out of step with the prevailing cultural norms. It essentially mandates attendance at a school for the deaf and immersion in Deaf culture while the dominant cultural imperative throughout the last half of the 20th century has been for inclusion-this was and still is the legacy of the civil rights movement. Separate but equal is counter-cultural. The irony is that the civil rights movement, which gave impetus to the bi/bi movement, is also leading to its diminution.
With the advent of the new century, technology has created an axial change in education of the deaf. Cochlear implants and neonatal screening have catapulted the deaf child into the auditory-verbal camp. We are now able to detect deafness in infants and provide sophisticated amplification in the form of digital hearing aids. If these are not sufficient then the child can receive a cochlear implant. Despite the opposition of the Deaf community, early detection and cochlear implants are here to stay. The current dominant service model often bypasses schools for the deaf entirely. Increasingly, referrals from audiological centers are to auditory/verbal clinicians, and the entire thrust of early diagnosis and treatment is to mainstream the child with hearing loss. Schools for the deaf increasingly are becoming repositories for the deaf children of deaf parents, those who have multiple disabilities, or who are economically disadvantaged.
Children with hearing loss are showing up in increasing numbers in public school programs, many of them with intelligible speech and grade appropriate academic skills (Moog & Geers, 1989). If we can intelligently apply all that we now know and use the available technology well, we have at hand all the necessary tools to mitigate the negative educational consequences of deafness. This is an incredibly exciting time.
The failure within the auditory/verbal philosophy has been the inability to recognize the social and emotional consequences of an oral success within a deaf context. These children, despite their good speech and language skills, are still hearing impaired. Many of them are the only such child within their school. They often experience social isolation and are not necessarily adjusted. The bi/bi approach gives children who are deaf an identity within a supportive community, a foundation that auditory/verbal proponents have been unable to match. We all need community, and if the successful oral deaf child cannot find it within the school context they will seek it elsewhere, much as Native American children seek their roots because they feel alienated from the dominant culture. We must give these children roots within a hearing/hearing impaired context. One concern that I have is that we seem to be separating children with cochlear implants from hard of hearing children who are successfully using hearing aids. These two groups of children are essentially the same population; they are just using different means to access sound. For both groups, the hard of hearing adult is the appropriate role model.
I do, however, have concerns about our ability to utilize everything that is currently available. It seems to me that technology has outstripped the level of training of most professionals dealing with early childhood deafness. Our diagnostic model has shifted from a parent-initiated model to an institution-initiated diagnosis. This profound shift has not been dealt with at the audiology training level. Audiologists, or hospital personnel, now have the unpleasant task of telling an unsuspecting parent that their child might have a hearing loss. This presents a very different counseling paradigm than the parent-initiated model where the audiologist is often seen as an ally confirming the parent's suspicions. The institution-initiated model will lead to many angry parents who kill the messenger because they don't like the message. As a consequence of the way most screening programs are conducted, the audiologist is often removed from the initial contact with the parent. Too often hospital personnel with little or no expertise in early childhood deafness, or in counseling for that matter, are the ones informing parents that their child may have a hearing loss. Parents then have to wait an inordinate amount of time before they can get confirmation from the audiologist. While we know the screening is not a diagnosis, the parents do not.
There is an ongoing problem with the number of false positives in the testing process. The parents with normal hearing infants will go through similar agonies as parents of children with hearing loss until they get a confirmation. This is such a vulnerable time for both parent and child that we must be very mindful of the potential impact a diagnosis or false diagnosis has on the parent-child bonding process. I think progress is being made in bringing down the false positive rate (Hayes, 2003), and I am encouraged that more counseling is being introduced into training curricula. I am optimistic that within the near future, good to excellent screening programs will be in place, at least in urban areas.
The weak point for me is the follow-up once the diagnosis is confirmed. We do not have nearly enough well-trained clinicians who can work with deaf infants and their parents. Early intervention programs have little or no expertise around early childhood deafness. There seems to be slippage between the diagnosis and the initiation of treatment. There are still not enough parent-focused clinicians, although I am hopeful that that is also slowly being addressed. In view of early detection and early use of amplification, we need curricula that are developmentally based. Our current ones, which are remedial in nature, are based on detection and treatment initiation at the toddler level and are not suitable for this new generation of infants with deafness (Kurtzer-White, 1999).
What of the future? I see cochlear implants getting increasingly better. After all, we are only on the third generation of this device. Binaural implants are already here and fully implanted devices are coming shortly. I think we will be implanting infants at increasingly younger ages and implanting children who are now classified as mildly to moderately hearing impaired. I think the surgery will be routine, as cochlear implants are now done on an outpatient basis at many surgical centers, and implants will become the dominant form of amplification for people with hearing loss. I think there will still be small pockets of culturally Deaf people who will be on the margins. Until we get the inclusion model fully operational, we will go through periodic cycles whereby the Deaf community and the romance of ASL are rediscovered by adolescents with hearing loss. I think a cure for sensorineural deafness will come some time in this century, and I have great faith that stem cell research will ultimately enable the growth of hair cells.
As a profession, we have not even begun to address the implications of the social identity of so many children with cochlear implants. In the words of my good friend Mark Ross, these are hard of hearing deaf children who are attempting to mainstream. Many of them will be the only child with hearing loss in the school wearing a very complex piece of technology that no one within the school understands. ASHA is failing these children by diminishing the number of hours in hearing disorders required for certification by speech-language pathologists. Very often the SLP is the only professional within a public school setting who has any training in hearing disorders. They are going to need more information about deafness, not less. Therefore, until we get the integration model right with well-trained professionals who can adequately support the child, we will have pockets of alienated adults with hearing loss who are disillusioned by the promise of auralism and its failure to deliver.
Despite all our current difficulties, I think this is a wonderful time to have been professionally active in early childhood deafness. I have seen us move from a bleak prognosis to a hopeful one; from restricted vocational opportunities to almost unlimited ones; from limited academic skills to grade appropriate skills; and from unintelligible speech to normal or near normal speech intelligibility. I think children with congenital deafness will have the choice of being included within the cultural mainstream or not; and hopefully they will be able to move seamlessly between both worlds. I personally feel very privileged to have been a part of this true revolution.
David Luterman is professor emeritus at Emerson College and director of the Thayer Lindsley Family Centered Nursery for Hearing Impaired Children. Contact him by e-mail at dmluterman@aol.com.
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