Isolation to Self-Expression for the Hard-of-Hearing
Original Blog Post
Author: Frank Barnes, III
Original Date of Essay: May, 2015
Please do not tell me that I have a disability. Even though I know that you mean well,
please do not bring up the fact that I am an outsider within my culture and upbringing. My community does not have the time to sympathize with a hindrance to the perception of our ethnicity. It is already frustrating enough to be at a general disadvantage as a minority, without this additional isolation of hearing loss. I need to be included, but how can that happen when I have to function outside of understanding the environments taking place around me? I have a cochlear implant, and I feel uncertain of how to live my life as a Black individual in a rapid and ever-changing hearing society.
The state of mind of each person, in regards to their given conditions, are a key factor into the ways that they engage their surroundings on a day-to-day basis, and create their enjoyable experiences. When one’s attitudes are misaligned away from opportunities within their reach, the fallout manifests itself below the full potential of an individual’s well being. It is reasonable to say that the opening discourse placed above is a fair statement of how a young Black hard-of-hearing person might feel in regards to functioning with a cochlear implant. I am equipped with this medical device as well, and while I do not represent the entire spectrum–of various economic, educational, social, family (et cetera) circumstances–I do empathize with being a Black recipient of a cochlear implant.
Within this arc of cochlear implant social media is the highlight of experiences–sharing
insight of stories that are empathetically relatable, daily in activity, and understood by many. A telling revelation from a parent with a CI-equipped child, about deaf-centered social media, is that “you’re actually talking to somebody who’s been through it, or is going through it. I mean, your friends and family are awesome, but they’re not the one with the child, and they’re not the one who lives all day long with a child with a hearing loss...These people can actually feel with you, and understand with you. Give advice and give a good pat on the shoulder. They understand...I don’t know what I would do sometimes without the parent support group because after, you know, a couple of weeks of not seeing them, it’s like, oh good, I get to talk to somebody about this, this, this and this, and right now we’re in the potty training stage, and it’s like oh my god, I don’t know what I’m doing” (Zaidman).
The topic of focus being addressed is the championing of self-care for minority (specifically Black) cochlear implant users within today’s platforms of social media. Social media enables expeditious, intricate discussions and nurtures users to interact with fellow people who face familiar hearing barriers, both online and in person. The objective guiding any and all present methods of research into cochlear implant social media is to highlight a particularity, which is a Black individual who is hard of hearing, and to further determine the worthwhileness of active social media integration into one’s life. There are restrictions in terms of the evidence used to reinforce analyses and observations, being spotlighted within the marginal demographics of gathered data. Furthermore, the purpose of the retrieved findings is to define the various barriers that may limit awareness of cochlear implant resources, as well as perpetrate a lack of social media in support of the hard-of-hearing. The output that is sought through the entirety of research is to establish and recognize the diverse benefits of cochlear implant social media towards boosting the quality of a lifestyle.
The three largest cochlear implant companies–Cochlear (most active), Advanced Bionics, and Med-El–are widely active on social media: through Facebook, YouTube, and on their own website forums, discussion groups, and mentorship. Honors Thesis research conducted through the Program in Communication Disorders at the University of Arkansas elaborately details the impacts and usage of social media among Cochlear Implant users, as well as other groups of deaf individuals. A case study of “Social Media Utilization in the Cochlear Implant Community”, conducted by the Tufts School of Medicine (and further collaborations) supports my own personal belief, supported by medical know-how, that “it is important [for] medical providers to understand the type of health care information available online. [At this time], no previous study has investigated the utilization of social media in the CI community.” (Saxena). It is evident that “the CI community engages in the use of a wide range of online social media sources. The CI community utilizes social media for support, advocacy, rehabilitation information, research endeavors, and sharing of personal experiences” (Saxena).
Within the deaf community, “the age of modern communication technology [and its its appearance in recent society] has proven to be both beneficial and disadvantageous to educated civilization. One group of people in particular has experienced this new technology’s pros and cons: the hearing impaired” (Bodemann). While technology helps bridge particular barriers, there still seems to remain a racial divide in the access to important social media platforms among people with hearing loss. Often times, the divisions that structure a system of class and status is additionally entwined with particular ethnicities living across a nation. In the United States, class is is astoundingly attached with ties to race. In some situations, racial lines are inaccurately stereotyped in negative perception–however, in other scenarios there is legitimate background that feeds into appropriate inquiry such as in the area of one’s health and care.
A study published in the online Journal of Gerontology: Medical Sciences “analyzed data from a two-year cycle of the National Health and Nutrition Examination Survey....[in which] researchers found that about 3% of those with mild hearing loss, 40% of those with moderate loss and about 77% of those with severe loss used hearing aids. They noted that cost may not be a factor, since in the U.K., hearing aids are covered by the National Health service and their rate of hearing aid use is about the same” (Stein). In contrast, insurance coverage for hearing aid costs is remarkably not available within the U.S., and therefore adds to the disparity of minority hearing aid users–perhaps due to economic circumstances–and in turn allowing a lack of presence across impactful social media that is focused on connecting recipients of cochlear implants.
A considerable backdrop to the issue of minority presence among the hearing impaired is tied to self-reporting, and a lack of making a situation impacting a family member known to doctors and fellow professionals, in order to best assist and provide. A notable observation is that “...15% of non-Hispanic White adults reported some form of hearing difficulty, [while only] 6% of non-Hispanic Black adults...reported hearing problems (Pratt). While some studies do suggest that ethnicities, such as Blacks, do experience less hearing impairment with certain genetic defenses, such as skin pigmentation and inner ear cells (Health Day), it is rather the appropriate acknowledgement that hearing loss is less addressed among minority families and communities. This stigma enables a cycle of lesser transparent opportunities to youth, as well as adults, for optimal care and full potential towards achieving personal success.
Importantly, social media technologies helps isolated individuals to access necessary resources, in spite of racial trends of limitation. To further empower the deaf and hard of hearing, social media websites need to continue to be harnessed, to improve provider to patient cooperation, as well as garner positive widespread publicity towards patient (and general) education, about deaf and hard of hearing lifestyles.
Primary Source Explication
[1] Zaidman-Zait, Anat. “Parenting a Child With a Cochlear Implant: A Critical Incident Study”. Oxford Journals. 20 Jan. 2007. Web. 12 Apr. 2015. <https://jdsde.oxfordjournals.org/content/12/2/221.full.pdf+html>.
Provided is comprehensive insight into the parent/caregiver resources available towards caring for a dependent with hearing loss. Noted is the availableness of support groups, not only for the CI recipient, but for loved ones as well (parents, family, friends). There is absolutely a positive benefit in the form of social media, in being able to connect with a community of people having a common care for hearing loss in their lives. Highlighted is the implementation of early intervention–the positive involvement and cooperation of parent, caregiver, professionals, social support, appropriate services, and necessary resources–to the optimal development and confidence of a person with hearing loss. I am personally familiar with such frontline efforts of remarkable impact. The usefulness of a social media site for the deaf takes into account this guidance and education for the adult spectrum–the demographic that is not always immersed with technology, especially social media–and requires both the awareness and advocacy of available online resources, to ease stressors and promote caregivers to be at their best capability to provide for an infant, young child, older adolescent, and/or young adult throughout various aspects of life.
[2] Saxena, Rajeev C. “Social Media Utilization in the Cochlear Implant Community”. Tufts University School of Medicine. Feb. 2014. Web. 6 Apr. 2015. <https://www.researchposters.com/Posters/AAOHNSF/AAO2014/SP310.pdf>.
Cochlear implants have been received by over 200,000 people in need worldwide, and
the number continues to grow as technology, affordability, and access to this resource improves. The availability of social media groups, forums, and mentorship are all efforts to bridge connection among and between hearing professionals and CI recipients as a mentorship of experiences and support. Communication on digital platforms has assisted in bridging the medical, social, and literal hearing barriers that exists for many deaf and hard of hearing people. The profound importance and impact of social media is highlighted as a life-line of interconnection for cochlear implant users, fellow recipients, hearing care professionals, as well as caring friends and family–medically and psychologically. As stated within the summary, the “purpose of this study was to investigate participation of the CI community in social media Websites”. This case study was conducted through the accredited American Academy of Audiology, and published to Pub Med–US National Library of Medicine National Institutes of Health. The inclusion of social media sources such as Facebook, Twitter, Youtube, as well as blogs and online forums represents an expected social landscape, and provides the comprehensive numerical input/output, and recognition of patterns, that will be allowable towards my research portfolio.
[3] (Saxena)
The factoring variables taken into account in order to conduct this study were the
functional categories that should be applied to social media sources, the different social media sources included in the review, the comparison of utilization patterns across different social media sources, and the particular Facebook utilization patterns observed in the cochlear implant community. A case study organized through Tufts School of Medicine equates that “population growth in CI users in the past decade has coincided with an extensive evolution of Internet-based communication patterns, including that of social media” (Saxena).
[4] Cole, Kevin. “Demographic Aspects of Hearing Impairment”. Gallaudet University. 21 Mar. 2012. Web. 20 Apr.2015 <https://research.gallaudet.edu/Demographics/factsheet.php#Q6>.
Through a study conducted at Gallaudet University, the responses gained from observation revealed that the “prevalence of hearing impairment is greater at all ages among the population living in rural areas, [that the] prevalence of hearing impairment at all ages decreases as family income increases, [and that] in the adult population, the prevalence of hearing impairment is greater for those who are not high school graduates (i.e., have less than 12 years' education) than for high school graduates” (Cole). These three distinctive highlights are not solely particular to the Black demographic within the United States, however it does indicate factors which employ historically limiting barriers for minorities, towards being made aware of certain technology, both understanding and accepting a medical condition, accessing resources economically, and therefore being able to maintain a presence across social media platforms to empower this community of the deaf.
Works Cited
– Bodemann. Margaret A. “Building Interaction with an Isolated Population through Social Media: The Deaf Community”. Honors Thesis. University of Arkansas. 2012. Web. 2 Mar. 2015 <https://uarkive.uark.edu/xmlui/bitstream/handle/10826/ETD-2012-05-231/BODEMANN-THESIS.pdf?sequence=2>. - Cole, Kevin. “Demographic Aspects of Hearing Impairment”. Gallaudet University. 21 Mar. 2012. Web. 20 Apr.2015 <https://research.gallaudet.edu/Demographics/factsheet.php#Q6>. Health Day. “Hearing Loss Seems to Affect Fewer Blacks Than Whites”. U.S. News. 2 Mar. 2011. Web. 20 Apr. 2015. <https://health.usnews.com/health-news/family-health/articles/2011/03/02/hearing-loss-seems-to-affect-fewer-blacks-than-whites>.
– Pratt. Sheila R. U.S. National Library of Medicine. “Prevalence of Hearing Loss in Black and White Elders” <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2719023/>. – Saxena, Rajeev C. “Social Media Utilization in the Cochlear Implant Community”. Tufts University School of Medicine. Feb. 2014. Web. 6 Apr. 2015. <https://www.researchposters.com/Posters/AAOHNSF/AAO2014/SP310.pdf>.
– Stein, Jeannine. “About two-thirds of older adults may have hearing loss, but blacks could be at lower risk”. Los Angeles Times. 1 Mar. 201. Web. 20 Apr. 2015. <https://articles.latimes.com/2011/mar/01/news/la-heb-hearing-loss-20110301>. – Zaidman-Zait, Anat. “Parenting a Child With a Cochlear Implant: A Critical Incident Study”. Oxford Journals. 20 Jan. 2007. Web. 12 Apr. 2015. <https://jdsde.oxfordjournals.org/content/12/2/221.full.pdf+html>.
Original Blog Post
Author: Frank Barnes, III
Original Date of Essay: May, 2015
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