Caught between two worlds: Perspectives of hearing parents on deafness #cochlear #ci #research

Perspectives of parents about issues concerning pre-lingual deafness

I was unprepared for what I learned in the weeks after we learned of Landon’s deafness. Of course I was aware of deaf people and sign language, but I was not aware at all of any controversy surrounding the implantation of a pre-lingual child. It would never have dawned on me that someone who was Deaf would see that as a trait and not a deficiency. It is not that I see deaf individuals as somehow incomplete, or broken, but just my world was dominated from my only cultural perspective, hearing.

Over the months that my wife and I explored the idea of cochlear implantation, we tended to avoid the deaf community once we became of aware of the issue from other parents with CI children. The avoidance was not because we did not want to hear from them, but we wanted to explore the idea of CI deeply before looking into alternative approaches. Hearing parents of children born deaf are cast into a world most of them barely understand, I know I had no clue. Many families report feelings of anxiety over the idea of implantation and quickly become conversant with issues surrounding Deaf culture. Many do this either through their own research or through exposure Deaf culture via deaf schools. In my research survey when parents were asked about their fears about their children existing in a form of cultural limbo, one that is neither accepted by the Deaf or Auditory community, many were very concerned about this during the decision making process. One parent, Betty, who has much exposure to members of the Deaf community described her experience informing her hearing and deaf friends. Betty explains,

I have many deaf friends and was overwhelmed by the difference in my deaf and hearing friends when we told them about [her]. Our hearing friends would hold back tears and try to console us. Our deaf friends were so happy- hugging us, hugging her saying “she didn’t fail her hearing test- she passed her deaf test!” “We can tell she is deaf- she has deaf eyes!”  I was concerned not so much about her being accepted as a deaf person with an implant (it is more “culturally acceptable” for a deaf adult to have an implant) but as a kid with an implant.”

 Betty, like others reinforce the notion that their decision to implant is more about providing access to hearing and not about “fixing” a malformation. In many cases, hearing parents having struggled with these ideas and concepts for months come to embrace a level of acceptance and advocacy for their children, which includes advocacy for the Deaf. Betty goes on to further explain,

We embrace Ann as a deaf child. We are not looking to fix her, we know and embrace her first language as ASL, we advocate for her and educate our hearing friends. We hire babysitters who sign with her, we have a dinner a week with voices off only sign. We participate in deaf events and she has been accepted.  

I felt in making the decision, that access to speech and independence were something the implants would be vital for. Her first language is ASL and she is a deaf child in a hearing family. She is building bridges in the deaf and hearing community.”

Contrary to what is stated in some literature that ASL and Deaf culture is not introduced to parents early enough, therefore parents make incomplete choices for their child . Parents seek much information on deaf culture during their research process. Throughout this study parents consistently report not taking any one “word for it.” Parents continuously research and reach out to all types of resources to help them make a decision on implantation. But, parents get many different sources of information on the Deaf. As Sherri explained,

We knew nothing about Deaf culture, or cochlear implants the day that we found out that our daughter was profoundly deaf. We almost immediately knew that we wanted to give her implants for the ability to hear, and also the possibility of learning to develop spoken language. My parent’s neighbor has a son who is deaf and was born deaf almost 60 years ago. We were “warned” through him that our daughter may be unhappy with our decision to implant her at such an early age and without her choosing when she is older.”

Sherri’s experience with this warning is much like what many hearing parents experience when being introduced to Deaf cultural issues. Many CI parents belong to support groups and communities and communicate frequently. New comers to the CI parents community become well versed that some in the Deaf community are hostile to the idea of CIs for children. Many parents report knowing of the issues and feeling it is not germane to the decision-making process and many take steps to avoid running into these arguments. As Mary stated,

We had zero exposure to the deaf culture and community prior to the birth of our daughter.  I became aware of the hostility surrounding cochlear implants from some sub-sections of the deaf community through the CI circle.  Once someone got through the screening process and posted horrible things about us parents and what we are doing to our child (child abuse, Nazis, torture and the like).  As this comment was so outrageous and ridiculous I did not take it very seriously or personally.  I also read a few comments from other parents who would run into this kind of mindset in different interactions with their kids.  So early on I protected our family from running into this.  I protected my facebook page with the strictest filters and was careful about what I read and did not read.  I think it would have been VERY different for us if we had deaf members of our family or other deaf people in our lives.”

This idea of guarding yourself from the deaf culture is how we first approach the research with Landon. We were very cautious and reluctant to engage with many in the deaf community even though they were reaching out to us. My wife because more convinced of the implantation idea earlier than I did and I wanted to make sure we were looking at the entire situation. My introduction to Deaf culture was pleasant enough. The local school of the deaf sent a very well meaning councilor to visit with us on multiple occasions. She invited us to a number of events but at first we choose not to attend. We decided to do a bit more research into various options for my son before committing down any single road; to this day I think my wife had made up her mind much quicker than I did and was giving me room to explore ways to come to grips with Landon’s diagnosis.

As an auditory person, having never been exposed to anyone “Deaf” as part of our family, we knew very little if any understanding of deafness. The one thing that had become apparent to me was the mild to strong objection the councilor had when it came to a strictly auditory approach using cochlear implants. Her objection was less about the implant itself, but the ultimate educational track of auditory-verbal alone. I made it clear that my wife and I were open to all options for our son as long as those options gave him the best chances in life. That sentiment is the top reason most parents decided to go with cochlear implants. Participants were asked if they had to describe the top three reasons why they choose implantation, the top reason consistently given was to provide the maximum life opportunities for their child. For example, one parent stated it as she wanted to Give him the absolute best chance to succeed in today’s world” and another parent stated that she wanted her child “to hear, learn to talk and read and not need an interpreter.” The second most reported reason for implantation was access to spoken communication. As one parent stated about her child within the context of interactions in life, “I didn’t want him to be left out because he couldn’t communicate”

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