Research Journal: Cochlear Implants

As I watched the documentary, Sound and Fury, I began having more and more questions about the Deaf community and cochlear implants. Cochlear implants have been a contested issue in the Deaf world since they were introduced about 30 years ago. Members of the Deaf community see cochlear implants as an affront to their culture and community. As ASL users, they do not rely on speech or sound to communicate and they do not view deafness as something to be “cured.” For pre-lingually deaf (deafness before language learning occurs) children, the implant is most effective before age one or as young as six months. In this case, children are not deciding to get implanted but rather a parent is making that choices. Because they cannot decide for themselves, Deaf community fears that the CI affirms deafness as a disability rather than allowing deaf children to learn sign and develop a sense of Deaf culture and pride.

Since the CI was first invented, technology has improved vastly. The number electrodes used has increased allowing for better and more diverse reception of speech and sound. Cochlear implants have gotten smaller and easier to use. The CI works by bypassing the hair cells of the inner ear and directly stimulates the cochlea nerve with electric pulses. A microphone outside of the skull receives sound input and the processor must determine the frequency of the sound and how it is to be interpreted.

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When I studied this in several of my speech and audiology classes, we were told that speech through a cochlear implant does not sound like the speech a hearing person listens to. Some people describe it as robotic or electronic, but what does it really sound like? Thanks, YouTube for answering that question!

This video plays the speech stimulus given and how it is heard by a deaf individual through a cochlear implant.

Research Journal: Sound and Fury

This documentary from 2000 follows the extended Artinian Family of three generations. Below is a family tree to outline who is who:

 

 

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Over the course of a year and half, the film documents the poignant struggle and clash between family members of the Deaf and Hearing worlds. At six years old, Heather, the oldest child of Peter, decided that she wanted a cochlear implant (CI). This device can be used with profoundly deaf clients experiencing a sensorineural hearing loss. It bypasses the damaged cochlea and use electronic stimulation to receive and process sound. Heather’s parents disapproved of the CI because they feared it would take her away from the Deaf world and their culture. Her father believes that as a deaf person his natural language is signing and his daughter belongs with the family in the Deaf world. While Peter Artinian and Nita, his wife, mull over Heather’s suggestion of a CI, Chris and Mari Artinian give birth to twin boys, one of whom is deaf.

Although Chris and Mari are both fluent in ASL and are closely connected the Deaf community, they decide that Peter (their deaf son) should receive a cochlear implant. Mari’s deaf parents are opposed, but Chris’ hearing parents are supportive. Mari and Chris agree that giving Peter the cochlear implant will afford him more and better opportunities in the future. At the conclusion of the 2000 documentary, Peter receives a CI and begins speech therapy. Peter and Nita Artinian decide against Heather’s implant and move their family to Maryland, where there is a large Deaf population.

In 2006, there was a follow-up to the film. At this point, Heather was 12 years old and her parents had opted for the CI for her and her brothers. Recently, Heather gave a TEDTalk at Georgetown University, where she is studying government and politics. Her talk focuses on “building a bridge” between worlds. In her case, she bridged the gap between the hearing world and the Deaf community as she knows it. She urges everyone “to reach out, allow other people in, try to understand different experiences, allow others to understand yours. No matter what your experiences are, positive or negative, you will make an impact.”

 

Research Journal: Fires in the Mirror

The play by Anna Deavere Smith opens with this line from an interview with Ntozake Shange, a playwright, poet, and novelist. She says: “Identity is…it’s a way of knowing that no matter where I put myself, that I am not necessarily what’s around me. I am a part of my surroundings and I become separate from them, and it’s being able to make those differentiations clearly that gives us identity.” Fires in the Mirror is a compilation of monologues that are extracted from various interviews done by Smith. Smith’s project began as a reaction to the riots in Crown Heights in August 1991. These riots were in response to a motor vehicle accident, in which a car in the procession carrying the Lubavitcher Hasidic rebbe ran red light and swerved onto the sidewalk. The car struck and killed Gavin Cato, a seven-year-old Black boy from Guyana, and injured his cousin, Angela. Rumors about the police and medical responders only assisting the driver and passengers lead to tensions between the two groups. Later that evening, a group of young Black men fatally stabbed Yankel Rosenbaum. For three days, the violence and tensions continued between these groups in Crown Heights.

Smith’s project began with interviewing various people of the Black community and of the Jewish community. Some of the interviews are directly related to the events in Crown Heights in August 1991, while others centered on broader topics of race and religion. Then, Smith took each of the interviews verbatim and crafted them into several monologues. These monologues are told as individual stories, but together they produce a complete narrative of these distinct groups.

In her introduction, Smith discusses her experience of beginning this project. As a classical trained actor, she and her peers were taught “the spirit of acting is the travel from the self to the other.” But Smith wanted to flip this idea. Her technique would begin with other coming to the self, thus empowering the “other” to find the actor. She hoped that each interviewee would have their own experience of authorship by telling their stories and answering her questions. This idea of giving the voice to the characters directly is an important part of memoir and storytelling. Although Smith’s name appears as the playwright, the authorship and voice truly belongs to the interviewees.

When the play opened in New York in May 1992, Anna Deavere Smith performed every role. As the interviewer, she assumed the voice, the posture, the gait, and the personality of each of her interviewees. The audience had a mixed reaction. Some were pleased to see these diverse yet connected characters on stage. Others were uncomfortable and thought her portrayal stereotyped and stigmatized the cultures. Smith comments on this in her introduction to the text saying that this is the “uneasiness we have about seeing difference displayed.” Once again this expression of the “otherness of others” becomes prominent in my research. Society, generally, regards difference as bad and unwanted, but works like Fires in the Mirror open up audiences to view their neighbors and learn about the experience of the “other.”

Here’s a video of Anna Deavere Smith’s performance in Fires in the Mirror.

Research Journal: Eakin’s How Our Lives Become Stories

The first chapter of Eakin’s book How Our Lives Become Stories opened up an infinite amount of questions and perspectives to consider as I continue to flesh out my capstone project.

Early on, Eakin writes about the definitions of “I,” “self,” and “subject.” In terms of autobiography and memoir, these words can carry various meanings. According to Descartes’ philosophical writings, the bodily “I”/subject differs from the “thinking I.” Descartes posits in one of his first writings:

“On the one hand I have a clear and distinct idea of myself, in so far as I am a thinking, non-extended thing; and on the other hand I have a distinct idea of body, in so far a this is simply an extended, non-thinking thing. And, accordingly, it is certain that I am really distinct from my body, and exist without it.”

But how does this theory of dualism interact with individual experience? Eakin continues to explore this idea. He cites several scenarios, in which a person loses “body awareness” in one way or another. After this loss, these people have experienced a transformed sense of identity. Eakin introduces several other psychologists and theorists, who support this connection between the physical sense of self and the sense of identity.

Gerald Edelman, a neurobiologist, emphasizes the brain’s ability to adapt to the “ever-changing demands of experience.” Each individual will have unique and distinct experiences. Edelman continues to explain the “higher order consciousness, as the ability to construct a socially based selfhood, to model the world in terms of the past and the future.” Humans are unique in this ability because of the developed language system we possess. The brain is constantly experiencing various events and actively creating impressions. However, every time a memory is recalled, the recollection differs based on the context and circumstances. Some questions: Because this higher order consciousness is based in our language system, how does later developing language (especially in Deaf children) impact this ability? What is the impact on social development and selfhood development when the language system differs from most peers?

Eakin goes on to explain Kerby’s five registers of self: ecological (related to physical environment), interpersonal (relations with others), extended self (existing outside of the present moment), private self (not available to others), and conceptual self (self-information). These selves are developed throughout childhood by the home and school environments. Once again, how are these registers affected by language differences? What creates autobiography/memoir? The private self or the conceptual self or the interpersonal self?

Eakin’s writing presents some very interesting cases of the interaction between the physical body and the identity of self. One case discusses a male who injures his leg and as a result experiences an injury in his identity. No longer able to feel and utilize an essential part of his physical being, the man lost his sense of selfhood and identity. This idea of sensory deficit leading to an identity deficit was confirmed in a study of congenitally blind children that developed the pronouns “you” and “I” much later than sighted children. As I continue my project, I think this difference in self-identity will also be relevant to the Deaf community. It will be interesting to see how age influences the formation of self in this particular population.

Finally, Eakin emphasizes “every experience takes place within a vast background of cultural presuppositions.” Yet another point to consider. Deaf culture is incredibly specific and unique. It functions with its own rules and expectations. As Eakin already stressed one’s identity is influenced by experience, but that experience is informed through culture.

Research Journal: Meet Sapheara–Marvel’s Superhero with Cochlear Implants

As I worked on my project proposal, the importance of self-identification made its way to the forefront. This concept of knowing oneself and your relationship to others is essential. Being able to relate and empathize with other people in a community is an important goal. So when I stumbled upon this article, I got incredibly excited.

http://abcnews.go.com/Health/hearing-impaired-kids-superhero/story?id=26297293

Now, I’m not a huge fan of Marvel or comics. But a superhero with cochlear implants—that I can love.

Marvel teamed up with the Children’s Hearing Institute and the New York Eye and Ear Infirmary to create the newest hero, “Sapheara.” This character with bilateral cochlear implants will appear alongside Blue Ear, another superhero that sports hearing aids. Not only will the comics tell an entertaining story, but they will also serve as an educational tool about devices used by the hearing impaired.

Every time I read a novel or watch a movie or marathon a show on Netflix, I look for characters that I can see myself in. How is this experience different for someone with a hearing impairment or other disability? Do they struggle to find relatable material?

Often kids with hearing impairments and issues are embarrassed or anxious about their diagnosis. Too many times, these children hide their hearing aids or unplug their FM devices. They struggle through classes without their assistive devices because they fear ridicule and scorn. But a new superhero may change that. Sapheara is a character that they can relate to. Suddenly, someone that looks like them, acts like them, struggles like them is coming to life on the page of their favorite comic book. Seeing these heroes as strong and successful while utilizing their differences can be so encouraging to the young readers.

As a soon-to-be clinician, this news is thrilling. I think Marvel’s new superhero will bring empowerment and motivation to this population. Because these comics aren’t just targeted to hearing impaired children, other readers will also benefit from a new understanding of cochlear implants and other assistive devices.

More Stories

This weekend I went to the Brooklyn Book Festival and came home with a bag full of new reading material. My favorite item from this haul is a children’s book called “I Get It! I Get It! How John Figures It Out: One Boy’s Journey and Triumph with Auditory Processing Disorder.” (Yes, I’m 21 years old and bought a children’s book, apparently it happens when your future career choice involves kids). The author of this book, Yvonne Capitelli, writes for children with the intention of building self-esteem and encouraging kids to make good choices.

Now, I could mull over pages of textbooks and scholarly journals to learn about Auditory Processing Disorder (APD). And I have done that in the past. From that experience I’ve learned that APD causes a disruption in the processing of auditory information because the brain does not properly interpret sounds, phonemes, words, and sentences. I could list symptoms, diagnostic tests, and treatment plans for APD but that doesn’t provide a full picture of the disorder. However, reading a story about this disorder from the lens of a child created a more complete understanding. The narrative chronicles John’s story from his academic struggles to his diagnostic evaluation and through his treatment and success. Rather than pages of speech jargon, there is a description of the disorder, as it would present itself in the real world. Communication disorders have side effects. A child with APD is not just his symptoms. He has experiences and emotions related to this disorder and that’s what this story really portrays.

There aren’t many books written for kids about children with disabilities, so I’m more than excited to have this new copy resting in my clinic one day.

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Research Journal: Storytelling

“Storytelling is joke telling. It’s knowing your punchline, your ending, knowing that everything you’re saying, from the first sentence to the last, is leading to a singular goal, and ideally confirming some truth that deepens are understandings of who we are as human beings. We all love stories. We’re born for them. Stories affirm who we are. We all want affirmations that our lives have meaning. And nothing does a greater affirmation than when we connect through stories.”—Andrew Stanton

In this TEDTalk, Andrew Stanton goes on to discuss what makes a great story. There are some obvious things—character development, a strong theme, a promise of outcome. All of these are essential to creating a great story. But he also introduced another suggestion for great narrative by asking, “does it invoke wonder?” Will audiences, readers, and listeners leave with a sense of awe and wonder? These elements of a story are not as simple of beginning, middle, and end. Rather, they need to be embedded into the content and plot of the story.

We need stories. Stories are important. They give us hope and they remind us who we are. They allow us to connect with others in unique and different ways. Stories can provide us with knowledge or teach us a lesson. They can make us laugh or make us cry. But a great story should always leave the audience struck with wonder.

Research Journal: Sign Language and Communication

When most people think of communication, they immediately recall words, speech, phrases, phone calls. But sign language is entirely visual; there is no spoken element of it. Pamela Weisman makes a really interesting point in her TEDtalk by saying “If you aren’t looking at the person you’re signing with, there’s no communication. Every second you look away you’re missing important aspects of your conversation, this makes communication more intimate and deeper connections are made. To the hearing, communication has become this thing we hardly even think about anymore.”

One of the first things that drew me to sign language was the visual component of it. In our modern world where many conversations happen with the barrier of a screen, I wanted to understand ASL in terms of total communication. If we all had to communicate using sign language, every hearing person would have to put down his or her iPhones and laptops while having a conversation. And while this would be a challenge for many people in today’s society, I would love to see communication like that.

As Weisman said, sign language allows for deeper more meaningful connections because it demands more attention and thought. Recognizing this aspect of sign language, can be helpful in improving all modes of communication. If we all realized the attentiveness and care that goes into sign language, we could apply that to spoken conversations and develop even better communication skills, even in a hearing community.

Research Journal: So Many Symptoms

In my three years of flipping through case studies and reading textbooks about disorders, I’ve noticed something that’s a little interesting but mostly worrisome. One disorder can have a multitude of ranging symptoms. According to the CDC one in every 88 children in United States currently has autism. That’s a massive population, but not every autistic child presents with the same symptoms. Each diagnostic criterion holds a number of symptoms. The Autism Speak website published this interesting graphic:

diagram_of_symptoms

It shows the overlap of symptoms and associated issues. Some of these symptoms are connected to each other, while others are somewhat removed. It is essential to understand the presenting symptoms before beginning treatment. If a child is suffering from the anxiety and mood aspects of a disorder, you cannot start to treat the language issues. On another note, these disorders vary in severity. Some children may be high functioning, while others are extremely limited by the disorder. Recognizing the various ways these symptoms can present helps determine what approach to use in the therapy room. I used autism as an example, but this can be applied to any disorder. The graph provides a visual guide to helping us recognize the impact of outlying symptoms and issues and how these may influence the treatment of the disorder.