Many of the reasons given by parents featured two primary reasons why my wife and I choose to go with implants. We wanted Landon to have the most opportunities in life. Specifically, we wanted him to have the option of being able to use auditory language. Second is that we wanted to be able to communicate with him in our native culture, a hearing world. Although numerous individuals cautioned us about Deaf culture and their feelings about implants, we agreed to visit an open house at the Louisiana School for the Deaf.
We were very specific with the Deaf school counselor that if our son was a candidate and we were going to put him through a surgery, we wanted him to have the best use of that technology. She assured us that “Total Communication” was the best approach and invited us to the School of the Deaf to see children on this path. If a bilingual approach could accomplish that through a school for the deaf, we were open to the idea. The administrators of the school were very good people, we were welcomed and they took a lot of time demonstrating all the services available. They are dedicated educators doing what they think is best for their students and I respect that. The event started out with a choir, most children had CIs, but few were very verbal. Having watched a video from an Oral-Deaf school with children signing a few days before, I was excited to see what these CI children could do. This was going to be my very first time seeing a child with a cochlear implant talking and singing. I was nothing less than shocked to see children with cochlear implants “singing” through sign language. Why was this such a shock? Because just a few days earlier I had watched a video from the Cochlear corporation of children signing with implants.
The verbal skills of the students ranging from ages 5 to 10 was low in comparison to those videos I had previously seen of Oral-Deaf children. A tour of the campus showed that many of the children at the School for the Deaf had other issues beyond hard-of-hearing. When I inquired about the situation, I was told that funding depended upon student headcount. That our child, having no other apparent disabilities, would not be housed in the same dorms as children with further special needs. The term “housed” was an attention grabber for my wife and me. When I inquired about the term housed, it was recommended that our child should live at the school for ASL immersion all day, every day; something as hearing parents we were not equipped to do. We were also given the option that given our proximity to the campus, that would not be necessary because we could drop the child off all day, every day. Needless to say, my wife was not too amenable to this prospect, neither was I. Frankly, I got a bit angry at the assumption that I could not raise my child effectively regardless of any perceived disability.
At the event, there were a number of children with CI, but all their language development was centered on ASL. We were encouraged to put our child on their “Total Communication” track but, from everything we witnessed, total communication was ASL first, verbal spoken language second. Our visit to the local School for the Deaf was nothing less than depressing. The hopes we had for implantation success was very diminished. It reinforced the sorrow I was still feeling for the loss of potential for my child. In that visit we witnessed parents that could not communicate with their children without an interpreter. It was something I did not want to deal with, I could not imagine needing another person to communicate with my son. It was not that I mind learning ASL, I would do whatever it took to help Landon, but I just kept thinking about how hard his future life would be. He would and will have to deal with things that other children will not have to deal with. In a way, I was still in the angry with God for doing this to my child.
A few weeks later, we were invited to a local support group for parents of children with cochlear implants. Honestly, I was disinterested in seeing another CI child, but my wife told me we were going; you have to keep Mamma happy. There would be a seven-year-old boy who had been implanted six years earlier. The experience was like night and day compared to our first exposure to CI kids. This young man was completely auditory, with only one implant. Without knowing, we guessed he was developmentally on par with his hearing peers.
Frankly, I could not understand the difference. I struggled with what could cause one set of children to be non-verbal although they were implanted and this child to be talking like my other children. As a parent and educator, I was truly perplexed at the difference in outcomes. That night I arrived home from the visit with the CI child, I dove head first into my first academic articles on the subject of deafness. But more important, I began looking at how we learn language, specifically spoken language. I quickly came to understand that much of what goes into the decision process for a child with CIs is not about the surgery, but what happens for the 15 to 20 years after the surgery. I realized that more important than the implant was the educational path the child was put on post-implantation. This new CI child I witnessed had been exposed to an auditory first approach that heavily relied on the cochlear implant. He had been exposed to an auditory-verbal form of education. From the moment he was identified as deaf and candidate, he was put into an intensive program of infusing a much sound and language into his life as possible. The decision on how to educate the child post-implantation was as important, if not more important to the surgery itself.
The more I spoke to those in the Deaf culture, the more I came to understand that ASL was a cultural trait, one to be cherished and fostered. It became clear to me that Deaf culture stance on cochlear implants would mean very little in the decision making process to me. Their goal of preserving a cultural trait had very little to do with my goal of wanting my child to hear and speak. I could not identify with them culturally, but I struggled for a short while with some of their stances.
Would I truly be depriving Landon of some unique cultural experience by agreeing to implant him? But at some point I recognized that my duty was to my son, not the larger cultural narrative being presented by most Deaf individuals. So much so, that at some point during the decision making process, I put aside worrying about any cultural Deaf issues and focused directly on the process Landon was about to undergo. Ironically, I came to believe that individuals with the most experience in Deaf issues would be very little help to us. Views of CI parents are varied and wide on the subject of cultural identity. Many never worry about denying their child the opportunity to be part of the Deaf culture. Many parents take very pragmatic view on the subject. There is a lot of diverse perspectives amongst parents. When asked about cultural limbo I think Maria sums up the feeling so CI parents when she said,
“No I never worried about that as we don’t live in a Deaf community but rather surrounded by hearing family/friends/peers and other hearing impaired peers and adults who are also oral like our family. We are used to being exposed to people from different cultures and being exposed to the Deaf culture should be just one more like the Latino of foreigner community. If we don’t feel welcomed despite showing respect then we will not be part of that community. To me it is just like any other decision about the people you surround yourself with in life.”
But from all the interviews and discussions with CI Parents it has become obvious to me that most if not all parents end up making a decision based on the idea of moral proximity. Moral proximity is that the closer you are connected to someone by virtue of familiarity, kinship, space or time, the greater the moral obligation you have to that individual. Supporting Deaf culture is valued and highly considered, but it becomes a secondary issue for most parents. So for instance, supporting Deaf culture’s desire to help them keep their cultural identity intact is a great thing, but it does not make you selfish or bad if you choose not to do that. Based on the proximity you have to your child versus the Deaf community or event the Hearing community, your greater moral obligation is to the welfare of the child and not to the welfare of the Deaf community.