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Why lower case “d” deaf culture matters

deaf culture
What does it mean to be deaf? It might be a question you’ve asked about someone else, or you thought about yourself. It might be out of curiosity, or empathy, or in attempts to find identity. It might be something you’re asking for a child who was born with hearing loss, or a parent who can no longer hear.

The truth is, being “deaf” is complicated. And really, it’s individual as much as cultural.

Being “Deaf”

In deaf culture, being “Deaf” with a capital “D” generally means the person identifies as a member of the “capital-D Deaf community.” Traditionally, being “Deaf” means using sign language as the main form of communication, attending schools and programs for the deaf where sign language is the focus, and culturally identifying as a “capital-D” Deaf person.

Few well-known individuals in our modern society actually fall under this group. Model and actor Nyle DiMarco, and 11-year-old actress Shaylee Mansfield are just a few of those who communicate publicly only using sign language.

Many others, including Golden-Globe winning actress and producer Marlee Matlin, and actresses Shoshannah Stern and Millicent Simmonds, identify with the “Deaf community” but use multiple communication methods, including sign language, hearing aids, cochlear implants, lip-reading or speech to communicate.

And still countless others, such as musicians Chris Martin, Huey Lewis and Eric Clapton; former U.S. President Bill Clinton; late-night talk show host Stephen Colbert; and actors William Shatner, Whoopi Goldberg, Millie Bobby Brown, and Halle Berry all have disclosed that they have hearing loss, but have risen to fame with their “deafness” largely absent from their public image.

Read more: Five deaf actors to watch on Netflix right now

The lack of d/Deaf visibility

The reason that celebrities and other public figures may not actively disclose their hearing loss can be attributed to numerous factors. It could be because of their desire not to be treated differently, or that they would like to keep parts of their life private, but more likely, it’s because of the general lack of accessibility in Hollywood and other industries in the “hearing” world.

“Never in Hollywood history have deaf people had an opportunity to get into these rooms and build power within in the community in order to tell our stories in an authentic way,” DiMarco said in an interview with NPR shortly after the premiere of the Netflix doc-series, “Deaf U,” in which he served as the show’s creator.

This lack of inclusivity and accessibility affects not only the celebrity themselves, but also the broader population. When the reality TV show “The Bachelor” recently included a deaf contestant, Abigail Heringer, who wears cochlear implants but communicates with speech, it was one of the first times many U.S. viewers were exposed to a speaking-deaf individual.

Without representation of all levels of hearing loss in our culture, we’re losing out on showcasing the visibility that makes us unique, as well as the opportunity to present role models and inspiring individuals whom others can look up to.

What does it mean to be “deaf”?

In short, being “deaf” usually comes down to what level of hearing loss an individual has, and whether or not they were born into a family with a history of hearing loss.

People who are genetically predisposed to hearing loss often identify as “capital-D” Deaf because their family members may already communicate in sign language and they may be already rooted in a deaf community through their education, values and beliefs.This group of people are also sometimes referred within the Deaf community as ‘Deaf elites,’ meaning they are descendants of well-known Deaf families.

Other people who have deafness in their families, however, use a combination of sign language and speech. This “speaking deaf” community has oral schools and has a community of support based in this communication method.

People who are born with hearing loss or diagnosed with a hearing loss at a later age, or those who do not have relatives with hearing loss, often identify as “lowercase-d” deaf or “hard of hearing.” More than 90 percent of deaf children are born to hearing parents, according to the National Institute on Deafness and other Communication Disorders.

Read more: Hearing Loss Terms You Need to Know.

These individuals are often raised in “hearing” households and may communicate bilingually in sign language or use speech – often learned with the assistance of hearing aids, auditory training, and lipreading.

The missing identity of lowercase “d”

Chances are, whether you’re aware of it or not, you know someone with hearing loss.

According to the Hearing Health Foundation, nearly 500 million people worldwide live with hearing loss. That includes one-third of people over age 64 and half of individuals older than 75. Among children, the U.S. Centers for Disease Control estimates the rate drops to 1 to 3 per 1,000. In 2017, about 6,500 infants were identified early with a permanent hearing loss, or about 1.7 per 1,000 babies.

Often times though, hearing losses can go without tracking of medical attention. While newborn hearing tests are now mandatory in many countries, sometimes it is missed, or the hearing loss develops later with age. People with single-sided hearing loss, for example, often are told by their doctors that they will be fine hearing only from one ear, and many of those who develop hearing loss later in life largely go without hearing assistive technology due to cost restrictions or personal decisions.

A 2020 survey by SeniorLiving.org found that 6.6 million people with hearing loss do not use hearing aids, due to cost or the fact that they “didn’t think they needed one.”

Whether from choice, lack of accessibility, education or the inability to afford hearing technology, many people get by not identifying with their hearing loss at all.

Read more: Deaf community and Deaf culture

Identity and hearing loss

Having a strong identity is important for gaining a sense of belonging and feeling more confident. Individuals who feel left out of a social role, or who can’t relate to their social identities because of factors such as hearing loss, can often develop a sense of loss or decreased self-esteem.

For people with hearing loss, the impact of not identifying or addressing this part of their identity can lead to depression, social isolation, and loneliness. On top of that, studies have shown that unaddressed hearing loss can lead to more serious medical conditions, such as dementia, brain structure, and cognitive load.

Read more: Who is impacted by hearing loss and dementia?

Read more: Study: The impact of hearing loss on mental health

On the positive side, finding identity though one’s hearing loss – whether you’re “Deaf” or “deaf” can lead to a sense of community, a renewed sense of self-worth, and new access to accessibility and awareness tools.

What are the barriers for a unified “deaf” community

While it may seem simple to invite all people with all levels of hearing loss into a community, there are barriers that make it difficult to do so. One of these barriers is the belief in the use of technology. For example, some people with hearing loss are against the use of technology at all.

“Too often, in Deaf culture, people say people like me [with hearing loss who use technology] don’t have a deaf identity, and that we’re language deprived, etc, which of course isn’t true,” says HLM Editor Lisa Goldstein. “”Regardless of whether we use hearing technology, those of us with hearing loss still have hearing loss. I’m still deaf with my CI. I can’t hear anything with it off, and with it on, I still can’t hear as well as a hearing person, so telling me I’m not deaf enough isn’t productive.”

A debate also often arises among parents new to hearing loss when deciding whether or not to get their baby hearing aids or a cochlear implant. Those in the Deaf community are largely against implantation. One of the main arguments is that they believe Deaf people should decide for themselves to get implanted or not. However, medically it is often recommended that implants are received at a young age to ensure cognitive and learning adjustments can happen. This can be confusing for new parents who are trying to find the best way to communicate with their newborn and discover a lifestyle that works for them.

“I’ve been told that my son, Cooper, will resent me for making the decision to get CIs for him, that I am selfish for doing so,” says Author and HLM contributor Beth Leipholtz. “I’ve been told that I am removing him from his true world, trying to make him conform to ours. The comment that has been most shocking and stuck with me the longest is from the day we shared Coop was a cochlear implant candidate. Since he was only two months old, and we’d only had his diagnosis two weeks, I had no idea the depths to which the controversy around CIs in the Deaf community went. A stranger actually commented on my personal Facebook post and told me it was a good thing he was a candidate, since I wouldn’t have loved him if he wasn’t and I would have thought he was defective. I think that’s when it truly hit me that this would be something we would be facing as long as we shared this journey. “

“I’ve been told that I am removing him from his true world, trying to make him conform to ours.”

This issue of using hearing technology also continues with age. Even at Deaf schools and universities that dedicate themselves to Deaf culture, there are many students who are bilingual in sign language and speech, and wear hearing technology.

In the show “Deaf U,” university student Cheyenna Clearbrooke faces this conflict when her peers dissect her YouTube videos and criticize how she mouths words while signing to appeal to those who can hear.

She later took to YouTube to discuss how she didn’t feel “deaf enough,” and how some individuals within the community made her feel frustrated and angry.

DiMarco, who helped create the show, told NPR that he actively sought individuals for the show who showcase the diversity of deafness – from the “Deaf Elite” to those living between the “hearing” and “deaf” worlds.

“There are so many layers, I believe, to that divide between elites and perhaps ‘lowercase-d’ deaf,” DiMarco told NPR. “It’s something that’s really key for our community. It’s very complicated, but it’s a discussion we’re starting to have.”

“It’s something that’s really key for our community. It’s very complicated, but it’s a discussion we’re starting to have.”

How we move forward to create a unified “deaf culture”

The first step in moving forward to creating a unified “deaf culture” is the basic understanding that every individual is different and entitled to their own needs.

By definition, culture is the manifestations of human intellectual achievements through arts, customs, ideas, and behaviors that form the base of a collective.

We have the ability to decide that all levels of hearing loss are acceptable and worthy. That each individual both has the ability to address their hearing loss in their own way, while still being able to feel connected with others who face similar lifestyles. We can decide to value the stories and personas of individuals across all levels of hearing loss, and give them platforms to share their stories with the world.

“We have the ability to decide that all levels of hearing loss are acceptable and worthy.”

Abigail Heringer, from “The Bachelor,” recently opened up about representing the d/Deaf community publicly, in an interview with Health.com.

“I was really scared when I decided to come on just because I think people view the hearing community and then the Deaf community – with a capital ‘D’ – as black and white,” said Heringer, who wears a cochlear implant and communicates orally. “And I’m kind of that gray space in the middle that hasn’t had a lot of light shown on.”

It’s that gray zone that we have the ability to define. Not in terms of limitations, but with openness and acceptance.

Finding your place in the deaf community

Whether you’re seeking a small network of individuals or aiming to transform policies for the collective, there are many groups and organizations out there to support people with hearing loss.

We encourage you to find people in your local community or participate in out-reach programs to find like-minded individuals who you can relate to, and, if willing, help break down the barriers that d/Deaf people in the hearing world face. Joining a sign language class, volunteering at a deaf school – whether it’s a school for the deaf or an oral deaf school – or just adding your deaf identity to your bio on social media can evolve in new connections and experiences that can develop your identity and community.

Since 2012, we at HearingLikeMe.com have been committed to creating an inclusive community. We share diverse voices of people with hearing loss from all over the world in our articles, videos, and on social media. With the support of the leading hearing technology manufacturer, Phonak, we also foster an inclusive community of deaf individuals in the “Phonak hEARo” program.

Read more: Join the “Phonak hEARos” and fight the stigmas attached to hearing loss

Whether you use hearing technology or not, whether or not you have family members who are deaf, whether you can hear a little bit or not at all, we hope that we can all move forward into a more inclusive and accepting society, within our community and beyond.

Join us in welcoming everyone into a deaf community, and making the world more accessible, accommodating and welcoming to people with all levels of hearing.

Author Details
The HearingLikeMe editorial team includes Jill Blocker von Bueren and Lisa Goldstein.