palo alto high school's arts and culture magazine

A New World of Hearing

A look into deafness, cochlear implants and the stereotypes that surround them

December 7, 2016

Sam McBride knows that when people look at her, they see her cochlear implant. Jumping to the conclusion that she needs their pity accommodations, they exaggerate their enunciation, talk a little louder, and assume she doesn’t know what they’re talking about. Deaf people are often treated as inferior, but many feel that their inability to hear doesn’t make them disabled. Unlike Sam, much of the Deaf community views their Deafness as just a different reality: not worse, just different.

It might seem impossible for someone who is deaf to fit in, especially taking into consideration that 95% of the world is hearing.  We have stigmatized Deaf people as somehow less than ourselves, and they are well aware of the sympathetic looks that are forced on them.

Today, technology is able to give a deaf child the ability to hear.  When Sam was one year old, she received a cochlear implant, an electronic medical device that replaces a non-functioning inner ear. Sam has never known a life without being able to hear, and she can’t imagine one.

“What if I’m walking in the middle of the road without my implant?” says Sam. “I’m not going to be able to hear.”

Sam was born Deaf on September 23, 1999 to Todd and Sarah McBride. The entire family received cochlear implants when the technology was still relatively new. Originally, the Deaf community supported the McBrides’ decision to invest in cochlear implants, but the idea of having to someday leave the deaf community loomed over the McBrides.

A portion of the Deaf community believes that if parents give their children cochlear implants, they are expressing that something needs to be corrected, that their child is disabled in some way. This originates the moment a child is born and is given a pass-fail hearing test. For many members of the deaf community, the idea of doctors proclaiming that a newborn deaf child has “failed” a hearing test is deeply offensive, because it directly contradicts their belief that deafness is not necessarily a disability.

Why would a parent not want their child to have the opportunity to live with the ability to hear? This might seem like a question not worth asking, akin to asking if someone could give an amputee the opportunity to have their legs back. But the general opinion of the deaf community is that a person doesn’t need to hear to live a successful and fulfilling life.

While hearing people might view cochlear implants as a way to contribute to the hearing world, many in the Deaf population view this as a loss to the Deaf community.

Most children who receive a cochlear implant will not learn sign language because it isn’t widely accepted by the oralism philosophy that dominates Deaf programs in the hearing community. Oralist schools educate Deaf students through oral language, which constitutes lip reading and mimicking the mouth shapes and breathing patterns of normal speech. Their primary goal is to integrate the deaf into the hearing society; however, this can create a great barrier between child and parent, maybe even ending a language that has been passed down for generations.

Although Sam started at an oral school for Deaf children before going to kindergarten, she still struggled in elementary school. Sam expressed her feelings about being Deaf and was quick to say how she differs from the rest of the community in viewing her Deafness as a disability.

“I think being Deaf is a disability because I can’t hear,” says Sam, “Everybody has [five] senses, and [I’m missing] a sense that is really important, and I need [it] in order to live …[If] I take the implant off I can’t hear cars running by, I can’t hear people calling my name, I can’t hear people telling me to get out of the way. It could be life-threatening.”

This inability to hear made her childhood difficult, as she had to face many obstacles that hearing people don’t have to worry about. As a young child, Sam spent a lot of time with her extended family. They are all hearing, unlike her parents and brother. This, in turn, helped show Sam the two sides of the world she was living in. Growing up, Sam often found herself interpreting conversations for her parents and trying to help them feel like a part of their family. Even though her parents were living with cochlear implants, they weren’t able to fully integrate themselves into the hearing world, because people treated them differently. Sam too, has felt this pity when teachers over-enunciate what they’re saying because they think they are helping her by doing so. This resulted in her family feeling constantly distanced from both communities.

After living most of her life caught between two worlds, Sam decided to share her perspective with the public by posting an anonymous blog directed at the deaf community, sharing her positive experience growing up with a cochlear implant.

Even though Sam understood there would be a lot of harsh backlash from her article, she decided to post it anyway.

“I wanted them to have opportunities to be successful and be able to communicate with hearing people around the world.””

— Sarah McBride

“They don’t like it because they think that when you give an implant to a Deaf child, you’re saying that the child is not perfect and that you need to fix them,” Sam explained.

In her blog, Sam draws from her personal experiences and asks the question, “Why wouldn’t you give your child a cochlear implant?”

As she had predicted, her article caused a lot of controversy, as many members of the deaf community didn’t seem to understand where she was coming from. Some felt attacked and expressed their feelings with bitter and ruthless comments.

“You’re emphasizing parents’ choice [to get their children implants], but nothing about the child. That’s sad,” an anonymous commenter wrote.

Others, however, were open to the idea of looking at this issue from a different point of view.

“I applaud you for writing this, you are absolutely right. This is your pride,” an anonymous commenter wrote.

Sam saw this controversy as an opportunity and decided to do something about it. She replied to as many comments as she could, offering her point of view and thanking them for their opinions.

The same summer that Sam posted her article, she served as an intern to Dr. Roberson, a doctor who specializes in cochlear implants. He operated on Sam and her family 16 years ago.

Her internship with Roberson has shaped the way Sam sees the world. She was able to help children who, just like her, were not able to hear until they received a cochlear implant. Sam plans to go into this field in order to serve members of the community transitioning from the Deaf community into the hearing world.

• • •

Stuck somewhere between the Deaf and hearing community is Sarah McBride, Sam’s mother. Born into a hearing family, Sarah spent the early years of her life trying to integrate herself into the hearing world. Her parents only realized her inability to hear when she turned three years old, a critical age for children to learn how to speak. While her peers learned to talk, Sarah was fitted with hearing aids and taught to lip-read.

Growing up in a hearing world was very difficult. “[Hearing people] have no patience,” said Sarah. “They have accents that [we] can’t understand when reading lips, and they’re usually not interested in repeating, which makes communication very difficult,” explained Sam, as she interpreted for her mom. Sarah grew up learning to be oral under school systems that were adopting the oralism philosophies.

While speaking comes naturally to the hearing community, it is difficult for the Deaf. In elementary school, Sarah’s Deaf friends would constantly practice talking to perfect their speech and better integrate themselves into the hearing world. However, even endless practice with her peers wasn’t enough for Sarah. “I try to be part of the hearing world, but my speech isn’t clear and my grammar isn’t great,” Sarah said. Even if members of the hearing community put in the effort to understand, the pressure and difficulty of communicating remains. “[Speaking] doesn’t come naturally to me.”

After being raised in the hearing world, Sarah attended the University of California at Santa Barbara. Free from the oral philosophies of her previous schooling, she was introduced to the Deaf community through American Sign Language (ASL). “[UC Santa Barbara] provided an interpreter, and that’s when I learned to sign. They provided an easier tool for me to communicate with,” said Sarah. After taking classes in ASL as the medium for communication, Sarah realized how much material had been lost in translation when she took the same classes orally in high school. Using sign language enabled her to learn more than she ever did orally, and Sarah says the experience led her to become addicted to signing.

“I grew up orally, but there was no connection between speaking and listening,” says Sarah. “Sign language is very visual, very logical. It helps me connect [information] more.”

Through UC Santa Barbara’s oral program and her proximity to the California School of the Deaf, Sarah got to spend more time with her Deaf friends, and gradually became a part of  the Deaf community. Although she grew up in the hearing world, she considers herself a part of the Deaf community because she feels they understand her more.

Despite this, Sarah chose to remove her two children, who were born Deaf, from the Deaf community by giving them cochlear implants.

“I wanted them to have opportunities to be successful and be able to communicate with hearing people around the world,” Sarah says. Although she doesn’t see being deaf as a disability, she believes that government and employers do. According to CPRF, an organization that helps those with disabilities get jobs, employers tend to classify Deaf people as incapable of performing a job because they assume they can’t communicate. However, this isn’t always true, as many Deaf people are orally proficient or can communicate easily if provided with the tools they need.

• • •

40-year-old Elizabeth Kunze, who has only known deafness, has a similar view to Sarah McBride. She doesn’t feel disabled, but that the government has limited accessibility for the Deaf effectively taking away their potential. “Our society focuses on disability rather than accessibility,” says Kunze. By not hiring the Deaf or providing captioning or interpreters, society takes away the Deaf’s abilities.

Born Deaf and having grown up in the Deaf community, she now works at the California School for the Deaf in Fremont. Although she has a few friends and a daughter who are part of the hearing community, she thrives in the Deaf world. Medical procedures offer her the opportunity to join the majority of the world in hearing, but she chooses to remain Deaf. “This is how my life has been since I was born. I am happy with who I am and the people I have in my life,” said Kunze.

Kunze believes being Deaf in a hearing world has significantly shaped her values and worldview. “Being a minority has its advantages,” said Kunze. “It helps you become more understanding of what privilege is, how oppression feels and have more appreciation for those who make an effort to connect with you.”

As happy as she is in the Deaf community, Kunze agrees that cochlear implants have benefits for children born Deaf. However, Kunze sees the implant as a tool rather than a cure. “I think the most important thing to do is to expose your child to ASL at birth,” says Kunze. “[Then] they have a strong language foundation and are not delayed [in speech]. People say giving Deaf babies [cochlear implants] will give them more choices. But then they take away ASL. That is taking away choices. It’s hypocritical.”

“We are all disabled from the viewpoint of a bee.” ”

— Kenneth Harrenstein

In addition, she strongly believes that every Deaf child should have access to the Deaf community. Being surrounded by like-minded people who are easy to relate to fosters self-confidence and self-assurance during childhood, which a Deaf child can only get from the Deaf community. It’s the only way for them to develop a strong sense of identity.

“Deaf people have a lot to contribute to the world, and being different is okay,” says Kunze.

• • •

Kenneth Harrenstein is the embodiment of that exact mentality. When Harrenstein was five-years-old he woke up one day and had lost all his hearing as a result of not being properly vaccinated for measles and mumps. However, he’s never let being Deaf hold him back.

He was “mainstreamed” (he attended a non-specialized school) and had trouble understanding and communicating with people around him until he was a young adult. Because he could not read lips, “[I spent most of] class reading to myself or passing notes to nearby students. I got away with it because I told the teachers I was ‘trying to find out what their lecture was about’,” said Harrenstein.

He described his schooling experience as incredibly boring, as he was unable to understand what was happening most of the time. Instead, he dedicated his time to reading and immersing himself in books.

“Music and radio were not options, and there were no closed-captions on TV or movies in those days. I would visit the library all the time and take out as many books as I could carry. I was extremely self-motivated to do well at school because I always felt like I had to prove that I was just as good — or better — than the hearing students.”

This drive is what he believes enabled him to get into the Massachusetts Institute of Technology. At MIT, Harrenstien worked on a project called the ARPANET. This was one of the first versions of email and online communication.

“I was motivated because I wanted that system to exist so I could communicate with people,” he said.

He is currently an engineer for Google in Mountain View. As the internet has evolved and changed, videos have become much more prominent. Members of the Deaf community had no way to take advantage of these videos because they weren’t captioned. Feeling the full impact of this disadvantage, Harrenstein took this problem to heart and decided to do something about it. Over the past few years he has been working with a team of other engineers to create captions on educational and important YouTube videos.

Harrenstein did not feel like a part of the Deaf community until he turned 21 and learned American Sign Language. Although he now works in the hearing world, Harrenstein still feels somewhat connected to the Deaf community.

“In the past several years I’ve met other smart, literate, and even high-tech Deaf folks, and really enjoy going to [Deaf events] to meet more,” Harrenstien said.“I don’t consider myself disabled, I’m just occasionally frustrated.”

Harrenstein views disability as something that indirectly affects everyone.

“We’re all disabled from the viewpoint of a bee, not just because we can’t fly but because we can’t see ultraviolet. We’re effectively blind to all but a tiny slice of the electromagnetic spectrum, as well as the auditory one — the phone system is designed to only transmit within a range of a few kHz for that reason. We use so many prosthetics daily — glasses, shoes, clothes, watches, wheels, knives, etcetera, that are all now considered ‘normal.’” In this way, being deaf isn’t something out of the ordinary for him.

There are a million Deaf people in the country and likely a million different definitions of “normal.” Sam McBride, Sarah McBride, Elizabeth Kunze and Kenneth Harrenstein have all taken different paths to find theirs.

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