The Interview

I have had the pleasure of e-mailing back and forth with Jessica Greenfield, she is the mother of Miller, her son who has a cochlear implant. I have written previous blog posts about Miller and his background and also Jessica and her background information but recently I sent her a series of questions that I was curious to get the answers to regarding his cochlear implant and reactions/perspectives.

1. How did you come to find out that your son needed a cochlear implant?

Our son Miller was born in Atlanta and failed his newborn hearing screening. In the US, 43 states have statutes of other regulatory language related to the universal newborn hearing screening. After a referral to the Ear, Nose and Throat physician and an Audiologist, Miller was diagnosed with a moderate - severe hearing loss. He had his hearing aids by 11 weeks. His hearing loss progressed to a Profound loss at the age of 3 1/2 and he became a candidate for a cochlear implant at that time. 

2. What led you to the decision of a cochlear implant vs. teaching him sign language?

When Miller was diagnosed with a hearing impairment, we investigated all of the communication options available including ASL. Our family chose Listening and Spoken Language for Miller that was made possible with the help of modern technology including Digital Hearing Aids and then Cochlear Implants. We wanted Miller to have the same communication mode that every member of our family and community does which is spoken English. For our family, this was not a difficult decision. 

3. Did the doctors ever mention to you your options other than the cochlear implant?

We discussed all of our communication options including ASL and TC (Total Communication or Cued Speech) with Miller's doctor and Audiologist. They encouraged us to make the decision that was best for our family. When we chose Listening and Spoken Language, we then discussed Hearing Aids and Cochlear Implants further since those were the technological advances necessary for the Auditory approach we took with Miller. 

4. The school your son attended where there where other children with cochlear implants…did he feel like he was part of a community or did he feel more secluded while attending that school?

Miller loved his time at Children's Choice for Hearing and Talking (CCHAT). He mainstreamed into a normal hearing classroom at age 3 and only attended CCHAT for speech therapy after preschool. He was happy learning to listen to and speak with other Deaf and Hard of Hearing children and he is equally happy at his mainstream school where he is the only child with Cochlear Implants. He gives presentations to the other classes at school about the technology of his Implants or "bionic ears" and the other children think it is very cool. He tells everyone that, just like his glasses help him to see, his implants help him hear. 

5. Is your son happy with the cochlear implant? Does he have any pain/headaches?

Miller has never had head pain or head aches from his Cochlear Implants. He plays soccer and races in duathlons, running and biking competitively. Not in all of his activities has he complained of pain. Miller loves his implants - they give him access to the sounds he loves and he wears them all waking hours. He puts them on immediately when he wakes up and does not take them off until he is tucked in at night. He has a waterproof processor that he uses for beach and pool time with his friends. He also manages his own technology which includes a device that bluetooth's sound from phones, computers and tablets in lieu of headphones. 

6.Do you ever regret your decision to implant your son? 

 No. Not for a single moment. 

7. Have you ever had negative attention since implanting your young child? (I ask this question because a lot of people are against implanting children)

We have had members of the Deaf community in California protest Miller's former school and say that we've turned him (and any other child with implants) into a "cyborg".  I've never had a single person who was not a part of the Deaf community say anything negative about Miller or his implants.  Everyone else thinks Miller is pretty amazing and celebrate his abilities with Listening and Spoken Language.

 I've always thought it interesting that someone feels some type of ownership over the choices I make for my child simply because they have the same disability.  I think that you should consider who it is that is against implanting children? Cochlear implants are not the answer for everyone. They were the answer for Miller. If Miller was unable to walk and he was a candidate for a surgery that allowed him to use his legs, we would have chosen for him to walk. If Miller was blind and he was a candidate for a surgery that would allow for him to see, we would have chosen for him to see.  We are very, very grateful for the amazing technology that allows Miller to enjoy playing the piano and recorder and be the DJ for his class parties. 

These responses have helped me realize that no matter what someone chooses for their child society as a whole should be more accepting and respectful. I was especially surprised to read that the only people that protested Miller's surgery was Deaf members. This is the exact opposite of what the Deaf community projects and what ASL interpreters support. Hopefully Jessica will continue to share her story and inspire people to be supportive members of society instead of  judgmental.

 

Bianca E. Stevens

One class, two perspectives

This semester I am enrolled in a class at the University of South Florida called Cultural Diversity. In this class there are a lot of American Sign Language Interpreting majors along with speech majors. The reasons for this majority is the content that this class covers has a lot to do with the Deaf community and also addresses several different cultures and how to approach these people differently while working.
Last week on Friday morning my professor, Mr. Surrency announced that class would be different. He gave us instructions for an exercise that he felt would get his lesson across better than a lecture would do. The instructions were as follows:
"When you hear the word DEAF what do you think about? If you think about a disability, hearing loss, hearing aids, cochlear implants, and doctors I want you to go to the left side of the room. If you think about a culture, language, community, and ASL I want you to go to the right side of the room."

The class then got up and moved to whatever side of the room their perspective reflected. I was not surprised to see that all my friends that were also in the ASL interpreting track were all on the right side of the room. Several of the speech/audiology majors were sitting on the left side of the room. To my surprise the Deaf student was sitting on the left side of the room as well.

Many students whispered amongst themselves wondering why this Deaf student would reveal that she has a medical view on deafness. Admittedly I was surprised but this was exactly what I wanted to write about this semester. I wanted to address the issue of shaming certain perspectives on deafness.

After the class was split down the middle the professor then asked that everyone pair up; one person from the left with one person on the right and discuss our views. He then wanted us to argue the opposing perspective, so for example my perspective was more cultural so I had to argue the medical perspective. For me, this was not an issue since I've been conducting research this entire semester on the medical perspective, but for many of my friends' who are leaning on the cultural perspective and are uneducated on the medical point of view had a very difficult time.

As a class, the professor asked us some controversial questions such as, "at what age is it appropriate to implant a child with a cochlear implant?" I was really surprised that a group of students yelled out "18! They should be able to choose for themselves!" The Deaf student in class also agreed that the child should be able to choose. What these students don't realize is that the longer you wait to get a cochlear implant the less effective it will be. If you find out that your child is profoundly Deaf at the age of 3 but you wait until they turn 18 years old, it may not even be worth the surgery at that point.

Another question Mr. Surrency asked was, "If a family knows spoken English as their primary language and their child is Deaf, should they go the medical route or integrate the child in the Deaf community?" This was a more complicated question because many people stated that the family should adjust and learn sign language and introduce other deaf people to their child. However, if you think about it....what is easier? Having the whole family adjust and learn a new language or having the child adjust to English?  Many families choose the easier route because they want their child to be able to communicate in their primary language. 

By the end of the discussions and going back and forth I do feel that many students got the point. That no matter what your view on deafness is, we should all respect each other and what choices people choose to make. With that being said, we have a long way to go.

Upcoming Interviews

For this week I prepared my interview questions for my field research. It was hard for me to come up with questions that didn't come off as one sided or too invasive but I did a little research on typical questions people have regarding cochlear implants. Some of the questions were as follows:

1. Did you regret your decision?
2. Do you suffer from constant head aches? Are you in pain now?
3. How long was the recovery process?
4. Why didn't you just learn sign language and participate in the Deaf community?
5. Did the doctors' give you all of your options upfront?
6. Are you happy with the level of hearing you have now?
7. Did it really improve your hearing that much?
8. Do you feel like an outsider still in a hearing world?

These questions were great if you were asking an adult about their experiences but what about a child? One of my field research studies is about a young boy, Miller. His mother has been e-mailing with me.

 I have been talking a lot with Jessica (the mother of a young boy who has a cochlear implant). She is so excited to share her experiences and her son's with other people. I told her about my current knowledge and what I have learned so far about cochlear implants, I also explained to her that previous to all my research I was only exposed to one perspective on the topic... The Deaf community is something I cherish and their opinions mean the world to me but I have to admit that I am slightly biased when it comes to the topic of cochlear implants.

I told Jessica that I am hoping after interviewing her and learning about her experiences along with her son's that I will be able to have an open mind about cochlear implants and maybe even realize that there is a community that exists for children like her son.

Jessica has a lot of information that she is going to share that is backed by scientific studies and evidence based medicine. She also referred me to her friend, Ronda Rufsvold. She is graduating with her PhD in sensory impairment from the Teachers College at Columbia University. She is a teacher in the front lines teaching children with hearing aids and cochlear implants and it will be very interesting to hear her perspective.

Jessica's son, Miller was aided at 11 weeks of age and when his hearing impairment progressed to a profound hearing loss they implanted him at age 4. Jessica sent me a link to a video of her son Miller answering her on a few questions. In the video there is some background noise but Miller was still able to  hear his mother's voice clearly. It's a very sweet and encouraging video, I'm happy to share it with you.

http://sakowitz.com/miller-interview

Some questions I plan on asking Jessica and her son are as follows:

For Jessica:
1. As a parent do you get a lot of negative or positive attention when talking about implanting your son?
2. Were you concerned about his age when you implanted him at 4 years old?
3. When you enrolled him in the school with other children that have hearing losses and cochlear implants did you see him thrive at school?
4. Do you talk to your son about the options or does he only know the world as one with a cochlear implant?

For Miller:
1. Do you have a lot of friends with cochlear implants?
2. Do you like your cochlear implant?
3. Can you remember when you couldn't hear as well?
4. Are you happy that you can hear with your cochlear implant?

I'm hoping that these questions will clear up any misconceptions people have about children and cochlear implants. Miller seems to be very aware according to his mother and is very open to sharing his emotions and opinions. 
The other field research I am working on is with an elderly woman who was implanted much later in life. She is going to be interviewed by a friend of mine in person and then they will send me her responses via e-mail. I am still waiting to hear back from them but I am super excited to share her perspective soon! 

Bianca E. Stevens

The Interview

I have found two people with drastically different perspectives on cochlear implants who are willing to be asked questions about their personal experiences.

I decided I would like to personally ask people questions about their lives and experience with cochlear implants and compare the results that I get. In order to do this I needed at least two people preferably with different opinions and ideas about cochlear implants. I posted a Facebook status asking people to e-mail me if they wanted to participate. I did not expect the results that I got so quickly.

In one day I had two responses that I will be using. The first response was from a family member of mine, Molly Hosseini. She was able to connect me with a woman who had her 4 year old son implanted with a cochlear implant. Her son is now 7 years old and I will be asking her questions via e-mail about her experience with the whole process and how it has affected her son's life. Overall, she has told me that her experience was positive. I will also be asking her questions regarding how other people treated her as a parent, a parent who was willing to take the risk of implanting her 4 year old child. There are a lot of controversial opinions on this topic so this would be the perfect opportunity to get her side of the story. Due to her son being so young I wonder if I am able to ask him questions directly through e-mail and have his mother type his answers, word for word. I will ask his mother if she would be willing to allow him to participate in giving his own opinion. If she is okay with this, I might ask him questions like how he feels with a cochlear implant in school? Is it helpful in his opinion? Do other children understand what a cochlear implant is, or do you get a lot of questions?

This little boy is friends with my younger cousin, Ronin. I was thinking to perhaps ask Ronin questions about his friend. Do you know your friend has a cochlear implant? Does he play with you the same as other children? Are you in classes together? This would be a great outside perspective from another child the same age as the other boy. A lot of parent's are worried to have their children implanted for safety risks but there's also the risk that they may not have many friends. They think that the implant will subject them to rejection. Is that true?

The other participant is a 93 year old grandmother with a very negative perspective on cochlear implants. She was referred to me by a woman I used to work for. This will be interesting because she is much older then the other participant and must have a very different story to tell. Cochlear implants have not been around for 93 years so she must have been implanted later in her life. I will be asking her questions about her life before her implant in comparison to now. Why was her experience a negative one? Was the cochlear implant what she expected? Does she regret her decision?

Also to consider, if this woman lost her hearing later in life and maybe wasn't born Deaf or hard of hearing this could effect her opinion. Many people say that if you lose your hearing later in life that you will never be able to truly appreciate the Deaf community and embrace your "loss." Is that why this woman perhaps chose to get a cochlear implant? Did she not want to be part of a Deaf community or consider herself hard of hearing? 

These two separate participants are a great way to get different perspectives and ideas on the controversial topic of cochlear implants. I am hoping that in result of all of this that people will read their answers and open their minds to different ideas and opinions.

I am so excited to conduct these interviews and share the results that I get. Studying cochlear implants so far has taught me so much about how we perceive the whole topic and why we need to open up our minds to other ideas. Not everyone is the same. Not one person has the same exact experience as another.

There are no right or wrong answers, just simply opinions.

-Bianca E. Stevens

Deaf for a day

August of 2014 John Barrowman decided to do what many people studying Deaf culture do. He decided to be "Deaf" for a day.

Deaf for a day is when a person who has the ability to hear pretends to be Deaf for a day. They might wear ear buds, or in John's case he had silicone implants made by an audiologist. The silicone made it nearly impossible for him to hear. The entire day was to be spent wearing those silicone ear buds so that he could get the full experience of what it is like to be Deaf.

Why might someone want to take part in this experience? Well, for most people studying Deaf culture we cannot fully understand what they go through every day unless we at least try it for one day. In John's interest he is an ambassador for hearing dogs and wanted to experience using one.

A hearing dog is trained to assist the Deaf and hard of hearing. Hearing dogs learn to alert a Deaf person when there is an emergency, such as a fire. When the dog hears the alarm they will alert the Deaf person by lying on their belly. The dog's can also wake up the owner, alert when the oven/stove goes off, and if someone is knocking on the door. Along with assisting the owner with alerts the dog also offers itself as an emotional companion. Deaf people are often shut out by the public and ignored and need a companion to enjoy throughout the day.

John Barrowman wrote a blog, goo.gl/kmc7BB.

In the beginning of his blog he states, "I could no longer hear the sound of busy London traffic, footsteps walking behind me or the buzz of conversation around me. I was anxious just crossing the road. This was before John was paired with his hearing dog. He would most likely still have anxiety about crossing the road as most Deaf people do but the dog would add some assurance and confidence to these types of activities.

John also said, "But until I experienced it for myself, I hadn't realized the huge impact it has on everyday things we take for granted, such as buying a coffee, and how it makes other people treat you differently." Almost all American Sign Language Interpreter majors have experienced Deaf for a day at some point in there studies. I am included in this majority. For my Deaf culture class the students were all required to be Deaf for a day and write about our experiences. I can relate to John's quote here because during my experience I attempted to apply for a job at a fast food chain. I was treated as if I did not exist, they absolutely did not want to be "bothered" with a Deaf employee and had no intention of giving me an interview. I was "brushed" off immediately by a manager and felt so defeated.

John also talks about his experience as being frustrating for other people around him, that they had no patience. Several times throughout the day he asked people to repeat things that they said so he could try and read their lips but most people would get frustrated and do the tasks themselves instead of allowing John to do them. John said he felt like the power was taken away from him, he felt defeated.

At the end of John's blog he states, "Hearing loss is on the rise and hearing dogs change the lives of deaf people." This is the perfect example of John's perspective after his Deaf for a day experience. His perspective remains that Deaf people have a hearing "loss." He didn't say that he thinks Deaf people should get cochlear implants or that they should attempt to gain hearing back but he used the term "loss."

Many Deaf people see this term as insulting as it implies that they have lost something. John may not mean what he said to be an insult or to even say that Deaf people have in fact lost something but maybe this is his way of saying that being Deaf for a day was difficult and he acknowledges that. It's all about perspective. 

So the question remains, is it a hearing loss or a Deaf gain?

-Bianca E. Stevens

Should we intervene?

An experiment was done to research early intervention and language development in children who are deaf and hard of hearing.

 The primary purpose of this study was to examine the relationship between age of enrollment in intervention and language outcomes at five years of age in a group of deaf and hard of hearing children.

Vocabulary skills at five years of age were examined in a group of 112 children with hearing loss who were enrolled at various ages in a comprehensive intervention program. Within this program they worked on oral pronunciation skills, reading, writing, etc. In addition to that 80 children were tested on their verbal reasoning skills. Participants were evaluated using the Peabody Picture Vocabulary Test and a criteria measurement chart. Each test was administered individually by a professionals skilled in assessing children with a hearing loss. Also, a scale was created to measure the amount of family involvement the children had with their intervention program.

Concluding the experiment was simple; there is a direct negative correlation between intervening at a later age. Interventions that took place as early as 11 months of age demonstrated significantly better vocabulary and verbal reasoning skills in comparison to the later enrolled children. High levels of family involvement correlated with positive language outcomes. However, if a child had late enrollment and lacked family involvement in the program, their scores were extremely damaged. The results suggest that success achieved when early identification is paired with early intervention that also actively involves the child's family.

This experiment is a great example of why parent's of a deaf child are concerned about intervention. Should they intervene and have their children implanted with a cochlear implant? Should they intervene and have them in a program where they practice their speech? Should they empower their child and solely rely on American Sign Language?

How parents decide to go about these questions strongly affects their child's life later on. For some people intervention is the best option but others feel strongly against forcing children to go through a program where they are forced to speak and conform to the normalities of a hearing world. Often times, if the parents are hearing and have a deaf child they may not even know about all of their options. They didn't grow up in the Deaf community and learn American Sign Language growing up. There is a whole community where their child could fit in and they are unaware of that world.

Immediately doctors will approach deafness from a medical perspective. Deafness is something that needs to be fixed and they know how to do that. They will provide parents with all of the medical options such as cochlear implants, schools with speech therapy programs, etc. Many Deaf people are angry with doctors due to them not providing information about the Deaf community or learning American Sign Language... Is that their job? Should a doctor have to provide information that has nothing to do with what they practice?

My personal reaction to all of this is that doctors should not have to provide all of that extra information on Deaf culture. If a parent has a deaf child I think that it is their responsibility to research all of the options. There is plenty of information on the internet, books, and TV that address all of the options. I would never expect a doctor to give advice against what they have learned to be a "disability," especially when Deaf culture is not their expertise. There is a reason why doctor's call it a "hearing loss." They believe that if you can not hear then that means you have lost your hearing, it has a negative connotation to it. Deaf pride is something within a person and not everyone understands what it feels like to have pride in something that others see as a loss. As Richard Masur siad, "I know Deaf people. I have discussed the issues with them. I've also thought about them a lot so I have some insights that go a little further than people who haven't had contact with the Deaf community."

-Bianca E. Stevens

Gallaudet is a federally chartered private university for the education of the Deaf and hard of hearing in Washington D.C. Through their press website I found an article, Cochlear Implants: Evolving Perspectives, which addresses the different perspectives on cochlear implants through three different examples. One example caught my eye, a woman named Julie and how her perspective has changed over time regarding cochlear implants. 

Since the 90's, people have become more accepting towards the idea of cochlear implantation surgery however there's still controversial discussion about the potential risks for both adults and children. According to Raylene, "It is still uncommon for culturally Deaf parents to elect to have their children implanted." I agree with that statement because a lot of Deaf parents have a strong belief in what it means to be Deaf. Most times if a child is born into a hearing family (meaning both parents are able to hear) they are more likely to get a cochlear implant surgery. However, Deaf parents want their children to fight oppression and have pride in themselves. Many Deaf people have reached success; become lawyers, doctors, scientists, and teachers. From their perspective it is not about the ability to hear but how you decide to live your life.

This article gives a great example of Deaf pride through their first example, Julie. She grew up with Deaf parents, went to a Deaf school, and interacted in the Deaf community. For someone who was surrounded with American Sign Language and very successful Deaf people, the idea of a cochlear implant seems unnecessary and maybe even disrespectful. Julie said, "I do not look at myself as disabled." To people with Deaf pride labeling deafness as a disability is taboo. That leads them to the question, why would they want to "fix" their deafness with a cochlear implant if they do not see anything wrong with themselves?

Another issue that Julie brings up, is the idea of giving children cochlear implants. She says, "Being Deaf is natural to me, and putting machines in children's heads frightened me." This is the same view a lot of people have in general regarding children and cochlear implants. Similarly, people say you shouldn't pierce a baby's ears because how could you know they would want that when they are older? Why do you get to make that decision for them?

The argument is that cochlear implants may make the child's life easier. However, if they decide to have the cochlear implant removed they will be left with a scar on their head and have a much harder time adjusting to life. With all that being said, Julie admits that her views on cochlear implants changed once she started working with children who had received the surgery. One of the biggest misconceptions about cochlear implants is that the surgery would change Deaf children and that they would not maintain a sense of Deaf pride. This is completely false when you are talking about a community as a whole. Not all people are the same, at least for Julie's experience she refers to Deaf children communicating with both American Sign Language and spoken English. The goal of the school was to teach Deaf children that they have options and that they can communicate with everyone.

Julie said, "Deaf children were able to have Deaf role models and maintain a sense of deaf pride with deaf teachers." I love that she was able to alter her perspective on cochlear implants and see it from a different point of view.

A huge part of the Deaf community has shunned away parents of children who chose to get the cochlear implantation surgery. They think it's a disgrace to the culture and disrespectful to Deaf people who struggle every day with communication. In my opinion when they shun away from others who are different from them they are doing the exact same thing that they are fighting against, oppression. People need to learn to alter their perspectives and become more accepting of everyone's views. 

I still believe that children should have the choice on whether they receive the surgery or not but I can understand a hearing parent's point of view and wanting to make life a little easier.

As Martin Luther King Jr. said, "The ultimate tragedy is not the oppression and cruelty by the bad people but the silence over that by the good people." 


-Bianca E. Stevens