Discussion 1: Perspectives in the Deaf Community
Beth Benedict, Ph.D., is an associate professor in the Department of Communication Studies at Gallaudet University.
Ben Bahan, Ph.D., is department chair of the Department of ASL and Deaf Studies at Gallaudet University.
Summer Crider, B.A., is a master’s degree candidate in the deaf studies program (specializing in cultural studies) at Gallaudet University.
Nancy Amann, Ph.D., is principal of the Arizona School for the Deaf and interim principal of the Arizona School for the Blind.
Raylene Paludneviciene, Ph.D., is currently an assistant professor in the Department of Psychology at Gallaudet University.
Beth Benedict moderated the discussion asking each panel member to discuss:
- Their perspectives on the impact of cochlear implants on the Deaf community.
- Recommendations for professionals who are working with children with cochlear implants and their families.
- Nancy Amann was also asked to discuss her role as an administrator in a school for the deaf in designing programs and services for children with cochlear implants.
Ben Bahan discussed:
- His background growing up in a Deaf family as well as having a Deaf family with two deaf children. He questioned whether his parents would have chosen to give him a cochlear implant had he been born five years ago, and if he would have a different story to tell in that case.
- The varied perspectives he has observed within the deaf community from those who understand it and support it, to those who have given up and say “the system has beaten us,” to those who are still fighting against it.
- His perspective as an academic in deaf studies taking a bird’s eye view of the topic and trying to understand the variations among complex perspectives on issues such as:
- What it means to be human, yet considered “not good enough” by society as a part the deaf community’s strong reaction to the cochlear implant as an invasion of one’s physical body.
- His concern in regard to the practice of withdrawing ASL for children with cochlear implants when their spoken language outcomes are unknown.
- His observations regarding professional guidance to families and what he calls “the myth of neutrality.” This concept disputes that professionals can truly be neutral in sharing information as everyone comes with a point of view and a bias that is conveyed even when neutrality is the goal.
Nancy Amann discussed:
- Her background being born and raised in New York City, attending Lexington School for the Deaf (which at the time was an oral program), a hearing high school, Gallaudet University, and the University of Arizona for her Ph.D. in bilingual literacy and reading. She has one deaf child and two hearing children.
- Her concern about the concept of a unified “Deaf Community” perspective on cochlear implants, as each person is an individual bringing a unique life experience to his or her perspective on this topic.
- Her beliefs as an individual who supports embracing the technology while at the same time promoting the importance of an additive approach that includes American Sign Language and deaf culture.
- The importance of taking a holistic approach to CI technology by including deaf individuals on the team of school professionals working with children and families, and by ensuring all early intervention professionals (both deaf and hearing) have the competence and confidence to share their understanding not only of the technology but of language development, including ASL.
- Her experiences and challenges as a deaf administrator establishing an early childhood program supportive of the needs of children with cochlear implants at the Arizona School for the Deaf, including:
- The process of establishing a bilingual ASL/English classroom in their early childhood program. This process involved biweekly meetings of a language planning committee to design the classroom to include: A deaf and hearing teaching partnership, strategies to address varied learning styles, guidelines to address equitable communication in the classroom, use of both ASL and spoken English, and separation of ASL and spoken English.
- The importance of avoiding the perception of exclusivity and segregation by designing the classroom to be inclusive of all children (regardless of hearing levels and use of a cochlear implant or hearing aid) and then implementing individualized strategies to address language allocation regarding how and when to use either ASL or spoken English. The importance of teacher planning as key to the success of this model was emphasized.
Summer Crider discussed:
- Her background becoming deaf at the age of three, growing up in a hearing family who were musical in nature, getting a cochlear implant at age 6, attending a variety of educational programs in both public school (with interpreters-some of whom were qualified and some not) and schools for the deaf, and her decision to attend Gallaudet University (which was related to her interest in exploring her identity as a signing person with a cochlear implant).
- Issues related to the varied identities of individuals within the Deaf community, and the academic question of whether or not individuals with cochlear implants will hold a unique identity within the deaf community. Within this context, she believes that it is important to clarify that a cochlear implant is NOT an identity. It is a technology that a deaf individual may be using.
- Her advice for professionals which includes the importance of professional flexibility, the need to honor the visual needs of a deaf child with a cochlear implant as they develop, and the importance of promoting a connection between children with cochlear implants with other deaf children and deaf adults.
Raylene Paludneviciene discussed:
- Her interest in cochlear implants and the deaf community from a professional and research perspective as well as a personal perspective related to being culturally deaf, a member of the deaf community, a native signer, and having friends and family members who have cochlear implants. She also discussed how her life experience has sparked a special interest in looking at how deaf people with cochlear implants can be a part of the deaf community, as well as how deaf children with cochlear implants can acquire ASL and spoken English.
- How from a professional perspective she has found it interesting to look more closely at the negative reaction of the deaf community to cochlear implants (especially for young children) from a historical perspective. This perspective promotes a look at the historic oppression of sign language, and the enforcement of speech therapy and amplification which for many deaf individuals was a painful process both psychologically and physically. With this history, cochlear implants continue to be viewed by some as another way (and an extremely invasive way with possible risks and questionable results) to oppress deaf people. To some deaf people, cochlear implants are viewed as repeating history and an unnecessary intervention in light of the availability of ASL and other assistive visual technologies. As professionals, it is necessary to be sensitive to and respect this history.
- The importance of the deaf community acknowledging that cochlear implants provide a new era of sound technology in comparison to hearing aids and of hearing professionals acknowledging the sometimes unrealistic expectations of some professionals and families regarding anticipated spoken language outcomes with the implant which can lead to inappropriate language and communication methodology decisions.
- Her advice to professionals about the importance of conveying to families:
- The value of a visual language in relation to many aspects of a child’s life from cognitive development to communication, to academics, to higher level thinking skills, to socialization.
- The importance of providing training to, and then involving deaf adults and deaf professionals when working with children with cochlear implants in schools.
- The benefits of a deaf-friendly environment for children with cochlear implants.
Beth Benedict closed the panel by highlighting the following:
- The dilemma of families caught between the medical view and the view of some of those in the deaf community on cochlear implants.
- The need to improve family counseling related to circumstances where:
- Families are not provided with the full range of options by some professionals who do not know or value sign.
- Families feel forced to choose one method over another when provided with limited and sometimes biased information in making this decision.
- Deaf professionals are not included in the decision making process as they may be stereotyped by parents and hearing professionals as being biased against cochlear implants.
- The importance of hearing parents having the opportunity to have a deaf mentor from the beginning.
- The need for professionals to share information with and counsel families about visual technologies in addition to auditory technologies (video phones, mobile text devices, flashing lights and other alerting devices for doorbells, alarm clocks, etc.).