Deaf versus Hearing cultural perspectives, #cochlear #cochlearimplants #ci

Hearing parents views on deaf culture

“Those are very neat earmuffs!” exclaimed the greeter at the Baby ‘R’ Us, shortly after our son’s activation. South Louisiana is not known for its cold weather, so when the temperature drops, Louisianans bundle up quickly. With politeness, we took a moment to explain to her that our child was deaf and this was an advanced form of hearing aid called a cochlear implant. Her reaction, “I’m sorry he cannot hear! I’m sorry!” Of course, this young woman was trying to be friendly and greet us as instructed. Her reaction as a hearing person was natural and expected. She was horrified to believe that she may have offered us in some manner. It had been a few months since our son had his implant surgery and had been activated. Implants were and are extremely rare in our area and with the flesh color Nucleus Freedoms against a child with dark hair, we had endured more than a few gawkers, silly questions and outright jaw dropping stares. By the time this young woman complemented us on our son’s earmuffs, we had built up a fairly thick skin exchanging our anger for people recognizing the difference in our son to take the opportunity to educate.

Regardless if its individuals on the street or governmental agencies, people and systems are not setup to support the unique needs of cochlear implanted children. When parents are asked about cultural limbo for their children, many worry that neither side of the augment will accept these children. When asked if she worried about her child being caught in “cultural limbo” because of her child’s implant, Martha summed it up like this,

Most definitely.  Although I also see that many in the Deaf world accept her as their community is under change.  It is a struggle for our implanted kids to have access to signing.  Schools want to do the bare minimum.  Schools don’t want to pay for kids to cross “district borders” so that they can go to public school with others like them.  I live in St. Louis area and when Rachel’s implants failed and she had to go with no hearing for over a year, instead of allowing her to go to a neighboring district, there are 3 with hearing impaired programs with sign support and other needs are met, they force her to be on homebound and isolated.  Our school for the deaf in MO (MSD) is struggling with the need to move forward to meet all deaf children’s needs and our dept of education (DESE) doesn’t get it even more.“

But for other parents, there approach the cultural issues with a more pragmatic approach. These parents believe their children will identify with their hearing culture. Many indicated that this cultural concern did not weigh heavily during their decision making process. As Caroline stated,

No, never worried about this. I never expected [our son] to want to be part of the Deaf culture so that wasn’t a concern. I expected him to become part of the hearing world and that we would kill ourselves to give him the habilitation he needed to do so. So far, so good on that plan. Above all that, I wanted to raise a child who is an independent thinker and has, more than anything, self-confidence. In my view, that gives any child the most important tools they need to succeed. This was not hearing loss-specific but certainly gives him the skills he needs to manage through any challenges he might face in finding a “home” in the Deaf or hearing world if that becomes an issue for him.”

But what does all this mean for you as the parent of a deaf child? With significant advancements in technology, a new world of sound has become available to some members of the deaf community presenting new language acquisition opportunities. Cochlear implants are transforming how language is taught for some deaf children. In recent years, alternative approaches to deaf education have relied heavily on advancements in technology, such as cochlear implants (CIs) [1]. A cochlear implant is a biomedical device surgically implanted into the cochlea of a severe to profoundly deaf individual. Very different from a hearing aid, which simply amplifies sound, a cochlear implant attempts to compensate for damage or nonworking parts of the inner ear using electrodes that send coded electrical signals directly to the brain via the auditory nerve [2]. It is important to note that a cochlear implant is not a cure for deafness. It is nothing more than a tool that allows some deaf children to acquire access to sound and results vary based on many different factors. Helping implanted deaf children to learn to use this technology requires a significant amount of work on the part of parents, therapist, educators and the students. There are many different educational tracks you will be presented with once a child is implanted. One approach to educational development is an auditory verbal, another is oral-deaf, yet another is cued speech and finally ASL. The foundation of some approaches are purely visual while others are purely auditory and many in between. How does one consume all this information in a period of high stress and make the best decision?

Framing the decision making process of the parent is the idea of the cochlear implant, the imperfect technology [3, 4]. Since their introduction in the 1980’s and approval by the FDA for implantation into children in the 1990’s, cochlear implants have become an alternative for teaching language to hard-of-hearing children. This perception of imperfection is derived from two primary dominant voices in the cochlear debate: the Deaf community and the Hearing medical establishment. Both have a unique view of deafness and those view shape and mold the information presented to parents during the decision making process. As this technology has increasingly become a standard of care for pre-lingual deaf children with the single most important factor for future success being age at implantation, issues of cultural genocide and the imperfect technology cochlear implants has been raised by the culturally Deaf [5]. Deaf culture takes a different approach to the concept of deafness than that of the hearing medical establishment. Dillehay [6] describes a vigorous debate about the use of CIs within the Deaf community beginning in the 1990’s. She points to that the debate focused around the concept that deafness being view as a “life to live” versus “a medical condition” to be fixed or cured. She points to the belief that fundamental to the question above is the idea that CIs represent the potential ethnocide of Deaf culture. Specifically, there are strenuous objections for surgical intervention for a procedure for a non-life threatening condition. Many point to the idea that children born deaf are visual, able to live a full and normal life as non-hearing individuals. Many arguments from Deaf culture is that the technology is imperfect and parents should not be allowed to implant deaf children.

In the United States, the predominant approach to pre-lingual deaf education is visual using American Sign Language (ASL). Significant research into the pedagogy of deaf education has been conducted and is based on a visual approach to language acquisition [7]. But more than just a language, ASL is seen as a defining trait of the Deaf community. ASL is a cultural attribute to be savored and promoted. Despite many successes with implants, the deaf community point out that adolescent implant recipients tend to show mixed results using these devices including problems with poor language and vocabulary acquisition [8]. The issues surrounding deaf education and Deaf culture are significant, profound and intimidating for new parents.

In many ways, the hearing and deaf camps provide two polar opposite views of deafness. One view is that deafness is a physical abnormality; one that can in many cases can be fixed via surgical or technological means. The polar opposite view would be that deafness is a natural state of being and that communication is a visual one through the use of American Sign Language. For the parents of one in every 1,000 children born in the United States, these are two factions to be faced and much of the information presented can be bias to one or the other’s dogmatic view. If you consider that 93% of deaf children are born into hearing families, it is easy to understand that the educational performance of these students will be affected. The natural language barrier between the deaf child and hearing parent can be significant. With very few hearing parents being visual language aware, the vast majority of hearing parents instinctively try to teach their children language via the spoken word. According to research conducted by the Gallaudet Research Institute, 72% of families do not use sign language with their children[9].

The breakdown of the parent as the primary education of pre-lingual children could be a significant reason many studies find that average reading comprehension of deaf students remains poor [10-12]. Although most of the literature on cochlear implants is in its infancy, the effects of hearing loss on academic performance has been researched and well documented for a number of years. Even a minor degree of hearing loss can affect a student academically and behaviorally and the more severe the hearing loss, the greater the range of problems experienced by the student [13, 14]. Many of the problems associated with hearing loss have been documented in various studies and some of the effects are an inability to respond to a difficult listening task, significant weaker word categorization and difficulty attaching meaning to sound patterns. To help alleviate this situation, significant research into the pedagogy of deaf education has been conducted and is based on a visual approach to language acquisition [7].

References

  1. Peters, R., Rationale for bilateral cochlear implantation in children and adults. 2006, Dallas Hearing Foundation: Dallas, Texas.
  2. NIDCD. Quick Statistics. 2010 January 20, 2011]; Available from: http://www.nidcd.nih.gov/health/statistics/Pages/quick.aspx.
  3. Sparrow, R., Defending Deaf culture: The case of cochlear implants. The Journal of Political Philosophy, 2005. 13(2): p. 135-152.
  4. Bouton, K., A son’s deafness prompts a scientific journey, in New York Times. 2014: New York.
  5. Paludneviciene, R. and I.W. Leigh, Cochlear implants: Evolving perspectives. 2011, Washington, DC: Gallaudet University Press.
  6. Dillehay, J., Genetic research, bioethical issues, and cochlear implants, in Cochlear implants: Evolving perspectives, R. Paludneviciene and I.W. Leight, Editors. 2011, Gallaudet University Press: Washington, DC. p. 20-38.
  7. Carlson, N., et al., Deaf education: Delivered the friendly way. National Social Science Journal, 2009. 31(2): p. 31-37.
  8. Pisoni, D., et al., Efficacy and effectiveness of cochlear implants in deaf children, in Deaf cognition: Foundations and outcomes, P. Marschark, P. Hauser, and M. Marschark, Editors. 2008, Oxford University Press: New York, NY. p. 52-101.
  9. Institution, G.R., Regional and national summary report of data from the 2000-01 annual survey of deaf and hard of hearing children and youth, G.R. Institution, Editor. 2002, Gaullaudet University: Washington, DC.
  10. Carney, A. and M. Moeller, Treatment efficacy: Hearing loss in children. Journal of Speech, Language and Hearing Research, 2003. 41: p. s61-s84.
  11. Traxler, C., The Stanford achievement test, 9th edition: National norming and performance standards for deaf and hard-of-hearing students. Journal of Deaf Studies and Deaf Education, 2000. 5(4): p. 337-348.
  12. Easterbrooks, S., et al., Emergent literacy skills during early childhood in children with hearing loss: Strengths and weaknesses. The Volta Review, 2008. 108(2): p. 91-114.
  13. McFadden, B. and A. Pittman, Effect of minimal hearing loss on children’s ability to multitask in quiet and in noise. Language, Speech, and Hearing Services in Schools, 2008. 39(3): p. 342-351.
  14. Dood-Murphy, J. and N. Mamlin, Minimizing minimal hearing loss in schools: What every classroom teacher should know. Preventing School Failure, 2002. 46(2): p. 86-92.

 

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