MEDIA NOTEBOOK: A Glimpse on the Life of Hard of Hearing and Deaf (HDD) Individuals

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PART I: Audible from Netflix

"Audible" a 38-minute documentary film by Netflix featured Amaree McKenstry-Hall who was a football player for the Mary Land School for the Deaf. The story evolved around the pains and gains of Amaree, as a Deaf individual, together with his friends. He and his teammates were also faced with various adversities in winning the football game and at the same time undergo emotional stress from losing a close friend.

Deafness Due to Meningitis

Amaree was born with hearing. By the age of two or three, he suffered from Meningitis and lost his hearing due to brain infection and swelling. He said that he cannot hear anything but can feel vibration, for instance the footsteps of his team mates when they run on the field.

What happened to Amaree was what usually occurs to children who suffered from Meningitis. It was said that sensorineural hearing loss among children can be mostly attributed to bacterial infection due to Meningitis (Wright, 1999; Signal et al, 2020). The onset of infection can damage the inner hair cells of the cochlear which can lead to hearing loss of = 60-70 dB (Wright, 1999) within 48 hours (Signal et al, 2020).

The Cochlear Implant

Amaree wears a Cochlear Implant (CI) so that he could somehow hear things. According to him, he only used it to listen to music as it kept him focused and gave him a feeling of calmness. For him, listening was feeling the vibration and hearing the music but not the lyrics. Based on research, Cochlear implantation for children who lost their hearing due to Meningitis gave them the ability to improve their hearing depending on various factors such as “cochlear ossification, duration of deafness prior to implantation, electrode insertion depth, etc.” (Signal et al, 2020). Most of those who underwent the procedure were placed to mainstream school after five years and proceed to higher education or find work after more than 10 years (Signal et al, 2020). In view, when possible, early testing and cochlear implantation must be done when the child suffered Meningitis (Signal et al, 2020).

Born with Hearing Parents and Family

Photo Credit: IMDB Audible

Amaree was the only deaf in the family. His father, left and abandoned them when he learned that his son became deaf. Meantime, being the only Deaf person in the family, Amaree felt lonely when members of the family converse without using sign language. He said that he experienced the feeling of loneliness when he was with hearing people.

Despite these circumstances, Amaree seemed to be emotionally stable. I believed, his mother learning the sign language had brought about his emotional and mental stability. His mother, being able to communicate with him, gave support and believed in his capabilities had contributed to his resilience and mental toughness. Specially, that he was able to join the football team and surpass the rigorous challenges of playing with internal strength and confidence.

Amaree’s father on the other hand, although abandoned his family at the start, was able to change his life when he found the Lord and became active with the church. He then decided to heal his relationship with Amaree and made his son an inspiration. Their journey to reconcilitiation started with his father communicating through sign language, spending time together, sharing his son's challenges and victories to his church members and being open to experience what Amaree was feeling and going through.

The Stigma

Amaree had a best friend, Teddy, who hanged himself after being bullied when he transferred to a hearing school. Teddy’s school mates looked down on him and told him “Hey you are deaf, what are doing here? You should go back to deaf school.” There were also times that his school mates would snapped or brush off his hearing aids. Teddy’s parents, who adopted him, disclosed that Teddy was being bullied because of his identity, family and friends. This took a toll on Teddy that he took his own life. A research reinforced this notion on bullying when more HDD individuals or children with disabilities were victimized by peers compared to the general population (Warner-Czyz et al, 2018 & Kayama & Haight, 2018 as cited in Cagulada & Koller, 2020) According to his mom, Teddy felt isolated when people cannot communicate with him. Meantime, the hardest part, for her as a parent, was when she felt helpless when trying to console her son without sound.

Teddy’s death had a big impact to the community. Amaree had bouts of self destructive episodes because he was angry and sad at the same time. However, he and his friends were able to recover and commemorate Teddy’s life by learning from his experience and striving to win every game. Although it would seem that the incidence of suicide was higher for people with HHD, a study reported that HDD and the hearing population had similar risk factors which were mostly centered on “family and relationship problems, social isolation and psychiatric illness” (Turner, Windfur, Kapur, 2007). Meantime, it was also found out that HDD individuals have higher levels of depression and were perceived to had higher risk (Turner, Windfur, Kapur, 2007).

The team’s football coach also shared that they experienced discrimination. He said that it was everywhere and that hearing coaches would not want to lose from a Deaf Coach. Some teams also do not want to play with them as they thought that their abilities were limited. This behavior is an example of social exclusion. There were being excluded because they were different and were looked down by some people who do not understand their capabilities. According to UNICEF (as cited on Cagulada & Koller, 2020) social exclusion was a reality and was experienced by children with disabilities on a daily basis. This becomes a challenge, specially for people with HDD.

Photo credit: Netflix Fandom

The Team’s Response

Playing Football and Winning

Members of the team felt that the only way to show the world that they were capable of doing things was to win the game. They practiced and trained hard just as other athletes do. It was their way of saying that Deaf people can do anything and prove that they were the same with others.

The Time The Team Lost The Game

The first time the team lost, all of them felt disappointed. Then, one person in the team said, “This loss will not define us a team.” An inspiring message not only for the Deaf people but for everyone experiencing challenges and loses. This was further expounded by both Amaree’s father and football team coach when they stressed that it was not about the adversity itself but on how they faced the challenges.

The movie was powerful, emotional and moving that it created a heightened awareness on the life of individuals with Hard of Hearing and Deaf (HDD). I even became teary eyed when I read the caption “Frederic, Maryland is home to one of America’s Championship High School Football Team - Mary Land School for the Deaf.”

At first I was disoriented as there were instances that I can only hear movements of the players, whistle, soft sounds of the environment and the cheer. There were also moments that a caption “melancholic music was playing” but I could not hear anything. Soon, I realized that the intention of the film was also to let the viewers experience how it was to be HDD or what Amaree was going through.

The visceral effect of the film made me realized how, I, for sometime contributed to the stigma, by thinking that people with HDD were not capable to do some things that hearing people can do. Thinking that they had a disability, hence, were restricted in performing some tasks. The Mary Land football team had proven this perception wrong by winning the game, and undergoing the same training and difficulties that hearing individuals would also experience.

This brings me to the issue of inclusion in the community, schools and even at home. Social exclusion can result to children/people, regardless of their status, from reaching their highest potential. Hence, I believed that bullying, as one of the severe manifestation of social exclusion, was reflective of the culture and values that was ingrained in the family, school and community. I remember when I was talking with a mom whose son with special needs was placed in a mainstreaming class. Her son was bullied by one of his classmates, in turn, hit his classmate with a pencil. The mother of the child who was hit complained to the Principal on why students with special needs were mixed with regular students and further asked for an apology. Then, I was surprised when the Principal said that the child who hit her son need not apologize. And that it should be them as the school administrators and teachers should apologize. The principal stressed that they were not able to teach and prepare the students in the mainstream class how to recognize and accept diversity. I was moved when I heard this story. A demonstration on how respect and diversity were valued. A step towards an inclusive society.

PART II: One Motion More (Consistently Inconsistent) Book 1 by LA Tavarez

I chose a book on how Deaf individuals were portrayed in a relationship with a hearing person. The book entitled “One Motion More (Consistently Inconsistent)” Book 1 by LA Tavarez, was a story of love and struggles of Xander, a lead guitarist of a famous band called Consistently Inconsistent. He experienced high and lows in his career, love life and usually ends up with bad choices. After a devastating event, he met Natalie, a Deaf person, whom he fell in love with at first sight. Their union created challenges as both had different background and lifestyles.

Photo Credit: Amazon

Misconceptions on HHD

The book featured some misconceptions about Hard of Hearing and Deaf (HHD) individuals. For instance, when Xander ask why Natalie did not just get a hearing aid or implant when he learned that Natalie was deaf. It was as if getting one will magically bring back the hearing capability of Natalie. What I found lacking was on the story was a brief explanation on why Natalie was not wearing one. Meanwhile, hearing aids or cochlear implants (CI) may not be appropriate or the best option for all cases of HHD. As always, there was no “ONE SIZE FITS ALL” intervention. Depending on the severity of the hearing loss, hearing aid or even the CI may not help at all (Goldmann & Mallory, 1992).

The author, for some reasons used Hard-of-Hearing and deaf to describe Natalie. However, this two were different and not interchangeable. Hard-of-Hearing pertains to individuals who still can hear to a certain extent (Goldmann & Mallory, 1992).

Communication Between Hearing and Deaf Individuals

The story also touched on biases or discrimination on Deaf individuals with statements like “How do you know if you’re into someone who can’t respond” and “At least this one can talk to you.” I believed that the notion that Deaf individuals does not respond or can communicate were just wrong. All human beings, regardless of their condition, can respond and communicate, albeit rather differently. This brings us to the various ways on how to bridge the communication gap between a hearing and HDD individuals. Some of which were featured on the book, such as:

• Use of hands to pointing items

• Talk like you usually do and not talk slowly or louder

• Looking at the Deaf individual not to the interpreter

• Gentle touch to gain the attention

• Use of mobile gadgets or tablets to type in messages

• Turn on subtitle if watching a movie together

• Use of interpreter during the concert so Natalie could understand the lyrics of the song

Speaking or talking was not the sole mode for communication or responding to someone. Different means and forms such as “gestures, mime, facial expression, and drawing” can be used to communicate with various individuals, most specially to HDD (Goldmann & Mallory, 1992). It was also like going to a country with a different language. I can remember when I went to Italy and Japan where English was not commonly used by the locals. Hence, we were communicating via gestures, texting, drawing and used Google translate when we asked for directions or give instructions.

Parent’s Struggles with Having a Deaf Child

Natalie’s parents were not supportive of her condition. Natalie was born deaf, however, her parents wanted her to learn how to speak. They never tried to learn or understand her language which was the American Sign Language (ASL). Natalie’s aunt was the one who supported Natalie when her parents turned their backs on her. Since, it was portrayed on the book that Natalie’s aunt and cousin, Kelly, were communicating with her in sign language, I could assume that they learned ASL simultaneously.

What happened to Natalie was similar to what Amaree’s father did — abandonment. I tried to research what causes parents to give on their child but only came upon on studies related to predictors of stress for parents with deaf children. There were conflicting results on studies made on communication breakdown between parents and their deaf child — One study suggested that communication between the two can influence parental stress while another study indicated that there was no significant impact (Asberg, Vogel, Bowers, 2007). However, the results of the study made by Asberg, Vogel & Bowers (2007) indicated that the stress level were the same for parents of children who were deaf and parents with hearing children. Moreover, the perception of having adequate support leads to lower stress levels which was also consistent with the research of Hassal et al. (2005), and; Lederberg and Globack (2002) (as cited on Asberg, Vogel, Bowers, 2007). This can mean that parents resilience and readiness to face various challenges may play a role on managing stress properly instead of giving up and abandoning their child. The mode of communication was said to contribute also to parental stress (Asberg, Vogel, Bowers, 2007). Hence, for the case of Natalie, her parents wanting for her to speak must had been frustrated and felt a high level of stress when they can’t communicate with her. Likewise, learning sign language can be perceived as a significant challenge by parents or family members of hearing families (Napier, Leigh, Nana, 2007).

Born Deaf and Acquired Deafness

Another Deaf character was introduced on the story, Ethan. He became a love interest of Nathalie when she broke up with Xander because she felt the lifestyle of Xander as a celebrity and at the same part of the hearing world was does not fit her well. She initially thought that she will be comfortable with Ethan since he was also deaf and would understand her better and that they shared the same culture.

While Natalie was born deaf, Ethan lost his capacity to hear after a temporal skull fracture from falling out on a tree at a young age. He was also fitted with a device which had restored his hearing at a certain degree. The difference between Natalie and Ethan was that he was able to speak English and can converse fluently. Ethan, who was able to hear and learn to talk prior the accident had an advantage in being able to express himself or talk, in expressing his thoughts, preferences and communicating with his parents, other family members and peers. In view, it must not had been difficult for his parents to adjust, given that they had provided Ethan the support and necessary tool to bolster his hearing capability.

Severe Temporal Bone Fracture (TBF), which may had happened to Ethan, can cause hearing loss brought about by “disruption of the middle ear and/or inner ear sensory neuroepithelium” (Cannon & Jahrsdoerfer; Maillot et al; Healy; Traumas et al.; Ishai et al., & Politzer, as cited on Napier, Leigh, Nana, 2007). In such cases, cochlear implantation (CI) may had been the device that was fitted to Ethan as CI was the viable choice of intervention (Napier, Leigh, Nana, 2007).

Lip Reading

It was mentioned that Natalie can lip read. It was usually a misconception that all HDD can lip read. The story did not mention how Natalie learned how to do lip reading, because it was an acquired skill and not something you can be born with. According to Goldmann & Mallory, (1992), lip reading involves watching the movements of the lips to understand what the other person’s message. However, lip movement was not the only thing that one must observe. Speechreading which involved various visual cues such as gestures, facial expression, body movements, eye contact and movement of the lips were used to interpret the message of the speaker. The HDD individuals can approximate or predict several times together with analyzing all the visual cues in order to unwrap the message of the speaker. Hence, it was very important that we make our sentence construction direct, short, simple and clear when communication with someone who prefers speech reading as a mode of communication.

The facts about HDD on the novel were somehow on point. There were valuable insights that the readers will learn about the Deaf culture, specially on establishing communication. Xander, exploring ways to communicate with Natalie and learning the sign language, gave a positive model that a harmonious relationship can exist between two different individuals. The author was also conscious on properly using the word “Deaf” and “deaf” but did not explain further how the words can be used in the proper context.

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PART III - Reflections

Watching Audible was my first movie about HDD. Watching opened up a new awareness on the plight of HDD individuals, for me. I felt the struggle and triumphs of Amaree, an inspiration not just for HDD but also to the hearing community. The book on the other hand, even though a fiction, can also help educate the readers to set aside their biases and be comfortable in interacting with HDD individuals. Some of the Deaf culture were featured on the book, hence, can be an eye opener for the readers. Unfortunately, I think there were only few mainstream novels that feature diversity, specifically on HDD. Natalie, was the love interest of the main character, hence her story did not fully evolved on her life and struggles as Deaf person.

Reading peer reviewed articles and researching on a particular condition mentioned either on the movie or the book, although taxing, was a satisfying endeavor. It was like matching theories with real life story. At the same time, I took comfort that there were authors that portrays the HDD culture well.

Being able to hear was crucial for language development (Goldmann & Mallory, 1992). Hence, learning how to speak must had been harder for Natalie and even for Amaree compared to Ethan, who was able to hear and learn to speak at an early age. This was congruent when it was mentioned that Natalie was uncomfortable speaking. However, it was not expounded on how she learned to speak and the challenges or struggles she went though in acquiring the sounds of various letters or words, without the capacity to hear. Amaree, on the other hand, lost his hearing when he was two or three years old, hence, must have only learned few words during those times that he uses ASL. I also did not hear him talk on the movie.

On the other hand, Ethan was able to verbalize himself fluently that people may think he can hear. This was also one of the misconceptions about HDD individuals, wherein if a person can speak well, it meant that he/she can also hear (Goldmann & Mallory, 1992). This actually gave me a new perspective on being sensitive and perceptive when somebody does not seem to respond to sound even though they can proficiently express themselves verbally.

Finally, suspending judgement was the most important insight that resonated with me for both the movie and book review. We suspend judgement when we see or interact with HDD individuals. After all, we are human beings that share the same rights, protection, respect, concern, compassion and love.

References:

Åsberg, K.,K., Vogel, J. J., & Bowers, C. A. (2008). Exploring correlates and predictors of stress in parents of children who are deaf: Implications of perceived social support and mode of communication. Journal of Child and Family Studies, 17(4), 486-499. doi:http://dx.doi.org/10.1007/s10826-007-9169-7

Cagulada, E. & Koller, D., 2019. It’s a Hearing World: Parents Perspectives of the Well-being of Children who are Deaf and Hard of Hearing. Deafness & Education International, 22:2, 139-155

Goldmann, W.R., Mallory, J.R. (1992) Overcoming Communication Barriers: Communicating with Deaf People. Library Trends Vol.4, Issue 1. John Hopkins University Press

Jemina Napier, Greg Leigh & Sharon Nann (2007) Teaching Sign Language to Hearing Parents of Deaf Children: An Action Research Process, Deafness & Education International, 9:2, 83-100, DOI: 10.1179/146431507790560020

Lubner, R. J., Knoll, R. M., Trakimas, D. R., Bartholomew, R. A., Lee, D. J., Walters, B., . . . Kozin, E. D. (2020). Long‐term cochlear implantation outcomes in patients following head injury. Laryngoscope Investigative Otolaryngology, 5(3), 485-496. doi:http://dx.doi.org/10.1002/lio2.378

Singhal, K., Singhal, J., Muzaffar, J., Monksfielf, P., Bance, M., 2020. Outcomes of Cochlear Implantation in Patients with Post-Meningitis Deafness: A Systematic Review & Narrative Synthesis. J Int. Adv. Otol; 1613:395-410

Turner, O., Windfur, K., Kapur, N., 2007. Suicide in Deaf Populations: A Literature Review. Annals of General Psychiatry

Wright, T., 1999. Bacterial Meningitis. Editorial. Blackwell Science, Ltd.