Glossary of Terms
d/Deaf – Important distinctions:
- “d” – deaf people who identify with the medical or physiological conditions of being deaf but have no (or less) connection to the Deaf community
- “D” – those who identify with Deaf culture and identity but tend to be removed from notions of medical deafness
- CODA – Children of Deaf adults
- SODA – Siblings of Deaf adults
- Hearing Impaired – a dominant narrative worldwide coming from the mainstream, yet implies lack or wrong with
- Hard of Hearing – a definition to which both ‘d’ and ‘D’ people might relate
- Hearing – the identity the Deaf community gives to the Hearing community
- Disability – a definition many Deaf people reject as it ignores Deaf culture experience
- ASL – American Sign Language
I have rarely had the opportunity to conduct studies that include people with disabilities. And judging from conversations with my peers, I am not alone. Yet, one phone call or RFP can change that in an instant and as qualitative researchers, we must be prepared.
To that end, in April 2020, QRCA’s Multicultural Special Interest Group invited Jack Sukimoto, an anthropologist who is Deaf, and his partner Jessie Aragón, a Deaf advocate, to a webinar to teach our members about d/Deaf culture.
Questions flowed into the Zoom chat immediately from QRCs concerned about how to communicate with d/Deaf individuals: “How will I connect? What do I do? How do I approach them with respect? I don’t know how to sign!” Their unease was soon put to rest. The two young speakers provided valuable insights about how to bond and build relationships with d/Deaf individuals, be it for personal reasons or for implementing inclusivity into our research practices.
Decoding d/Deaf: The Big and Little “D”
One of the biggest takeaways from Sukimoto and Aragón’s presentation was the incredible complexity wrapped up in the word “d/Deaf” itself.
- A deaf (lowercase d) individual has the medical or physiological condition of being deaf but lacks a connection to the Deaf community.
- A Deaf (capital D) individual identifies more strongly with Deaf culture while minimizing the medical and physiological significance of deafness.
Although it may seem like semantics, it is an important difference in how d/Deaf individuals identify themselves and others.
Insiders and Outsiders: The Deaf Center Model
Sukimoto’s d/Deaf Center Model describing the community of d/Deaf people further decodes how the community itself thinks of “insiders” and “outsiders” along a spectrum. Those in the center are the embodiment of the true Deaf-lived experience. They may have been born Deaf, have attended special schools, and think of the Deaf experience as a unique culture rather than a medical condition or disability.
Those within the circle, but close to the edge or just outside of it, have much more varied situations. For example:
- There could be Children of Deaf Adults (CODA) or Siblings of Deaf Adults (SODA) who understand how to sign but are not d/Deaf themselves.
- There can be the “Hearing Impaired” or “Hard of Hearing” who see the condition as purely medical.
- There can be people with perfect hearing who learn American Sign Language (ASL) just to get school credit but then never interact with d/Deaf individuals. On the other hand, there are those who learn ASL to become professional interpreters or because they find themselves in a new relationship with a d/Deaf person.
As helpful as the model is to understanding the nuances of d/Deaf culture, its creator suggests it is not an absolute. What goes unnoticed are the d/Deaf individuals, like Sukimoto, who do not adhere to such a rigid, conventional d/Deaf identity classification. He grew up in a mainstream household with no concept of the Deaf world until later, when he attended college and eventually learned to sign. He has navigated both worlds and considers himself to fall somewhere on the fringe of the circle. As Sukimoto said, “There are many people who share the same experiences as me on this borderline. That margin of being in the middle of d/Deaf and hearing is very large and continues to grow as implants become part of the d/Deaf experience.”
In everyday life, d/Deaf individuals naturally assess insiders and outsiders relative to themselves. It is a defense mechanism, a social survival skill that is key to maintaining cultural integrity. Knowledge of specific signs, proficiency levels, degrees of expressiveness of gestures, and signs for slang, etc., also indicate how empowered and close the person is to the community. If familiar with signing, the d/Deaf person will want to know where that person studied, and if they learned from a hearing or d/Deaf professor. As such, the Deaf community assesses the credibility of professors and is aware of those who do or don’t respect the community.
While it can be helpful to the assessor, such scrutinization often disregards how one may self-identify. Sukimoto explained, “When they change your own identity to fit their notions of who you should be, this is where you see discrimination happening.” One’s place on the Deaf Center Model can be subconscious and not everyone aspires to reach the center circle.
Sukimoto said that beyond having to figure out what it meant for him to be Japanese American and Asian, choosing a Deaf identity meant he would always be contested by other Deaf people.
“Just because I speak is reason enough for someone to say, ‘Sukimoto will never be Deaf, he’ll be Hard of Hearing at the most.’ It’s interesting because I don’t know if I’m [perceived as] a threat to the community, or if people like me change the other person’s meaning of Deafness and therefore change the center goal of community empowerment.”
As such, the constant evaluating by different Deaf people ends up alienating instead of creating inclusivity, and further denies the complexity and diversity within the community.
Dispelling Preconceived Notions about the d/Deaf Community
Did you know that over 90 percent of d/Deaf individuals worldwide are born into hearing families? I surely did not! For hearing parents, it is often the first time they have interacted with a Deaf person, and knowing what to do is a significant challenge. Eighty percent of those parents do not have access to Deaf education at all. And of those who do, only two percent have access to learning ASL (American Sign Language).
With the lack of formal training, many families create their own gestures defined as “home sign” language, similar to what babies are taught. With home sign, words are designated. But without grammar, it is not considered a real language. With so little formalized training, the deaf community language is in the process of becoming endangered, and Deaf culture is in flux. Language maintenance, inclusivity, and empowerment are key to reversing this trend.
Similar to other groups, the d/Deaf community is not immune to myths and stereotypes. Some include:
- Deaf people are expert lipreaders. Lipreading (also called speechreading) is extremely difficult. One word missed and the whole context of a conversation is lost.
- Deaf people cannot drive. Hearing is not a requirement to get a driver’s license.
- Deaf people don’t talk. Roughly one-third to one-half of d/Deaf individuals use their voice as a means of communication, even if they were born deaf.
- All hearing loss is the same, and all hearing aids restore hearing loss.
- Deaf people cannot listen to music. Every d/Deaf person’s experience with music is different due to hearing ability, access to hearing aids/cochlear implants, and interest, etc.
Sukimoto explained, “For the past seven to eight years, I have been using a Bluetooth device to listen to music, which feeds directly into my hearing aid and implant wirelessly. I could never use earphones to listen to anything because I would have to take my hearing aid out to put them in. I also always hated using headsets because they would hit my hearing aids, or cause a lot of feedback. I technically don’t hear out of my ears; all the sound goes ‘in’ through a little microphone on the top of my hearing aids, meaning I hear through the top of my ears essentially.”
On par with the myth that every blind person is fluent in Braille, therefore handed a Braille menu in a restaurant, the belief is that if a d/Deaf person has a hearing device or implant, they must be able to hear clearly. The majority of d/Deaf individuals who do have hearing aids and/or cochlear implants are rarely able to hear at the same capacity as the Hearing world.
Aragón described YouTube videos with children who are Deaf crying when hearing their mothers’ voices for the first time. What’s missing is more context, which is the fact that they’re hearing for the first time ever. “They’re crying because they’re scared and frightened; it’s out of their comfort zone. Plus, it’s mostly bad hearing and not 100 percent. Devices can give users an awareness of sound, but hearing someone speak clearly is unlikely. It’s always mutilated and muffled,” she said.
Rejecting the Disability Label
Those who are Deaf are often referred to as having a disability, a label that many reject. As opposed to viewing deafness through the lens of being a hindrance, d/Deaf people prefer to focus on the unique perspective they bring to society—an important insight for researchers to consider.
In addition to the “d” medical framework, there is an important notion around “fixing” deafness. Sukimoto referred to this as “gene editing advancements that have become an ominous fast-forward into the future that a lot of Deaf people see as a sign of things to come.” While ongoing improvements with hearing aids/cochlear implants are a reality, advancements on the horizon create a quick-fix attitude. Sukimoto added, “Parents with no reference will think they can take their deaf child to a doctor to be cured with a shot.”
While the Deaf gene might function as a valued form of cultural determination for some who are d/Deaf, Sukimoto said that it also represents a method of resistance “if the Deaf community ends up at the mercy of scientific advancement.” He recommended the film Gattaca, a 1997 American science fiction vision depicting a biopunk future grounded in genetic reproductive discrimination. The film contributes to understanding the pitfalls of future advancements while illustrating an accurate representation of the d/Deaf community’s lived experience.
Practical Applications for Researchers
Armed with a new appreciation for d/Deaf culture and its nuances, one may think it would then be easy to field a study with d/Deaf participants. Here again, it is critical to think through all of the complexities:
Initial outreach: Sukimoto and Aragón recommended approaching d/Deaf individuals as you would anyone else, using the signs, “Are you deaf?” (gesture pointing from ear to chin, or from chin to ear, while raising eyebrows). From there you can gesture to write or go to their phone. Say: “I’d like to introduce myself. I see that you are d/Deaf and want to be respectful.” You can communicate through an interpreter if that is preferred, but never talk to the interpreter. Always address the person who is d/Deaf through direct eye contact. Remember that interpreters are only there as mediators. Showing a genuine interest in getting to know the d/Deaf individual is key. Let him or her take the lead, and the relationship can be an amazing experience.
Sign language: Even if you know sign language, don’t assume the d/Deaf person you’re communicating with does. Not unlike other languages that mix and borrow, as with Spanglish, ASL itself is complex and full of nuances, accents, slang, regional, and localized dialects. East Coast sign language is different from the West Coast, and signing in Ventura County will be different from Los Angeles, etc. Another important distinction is how African American sign language is uniquely different from ASL in its syntax and sentence structure. While Deaf individuals who know sign language are considered bilingual, as with any other language, it is important to note levels of proficiency vary significantly.
Just as there can be stigmas associated with accents and articulation, the same is true with sign language. d/Deaf persons who are less fluent in sign language, or do not sign because they grew up in the mainstream, are often discredited for not being fluent. Sukimoto’s experience while conducting ethnography among d/Deaf individuals also revealed this vulnerability. He stated, “When doing ethnography, there was a sense of insecurity. They felt that if they had to do the interviews signing, and if their skills were on display, they’d be judged. But I didn’t care about that because I come from that same space.”
In-person methods: In-person focus groups require screening for similar d/Deaf attributes pertaining to levels of d/Deafness, device usage, and level of sign language capability, etc. Depending on the topic, segmenting based on d/Deaf identity may be advisable. A qualified interpreter is essential and can make or break the flow and depth of conversation.
Online methods: As a preferred way of communicating with others, the d/Deaf community was using Zoom as a user-friendly platform for communication well before the COVID-19 pandemic. Online webcam groups and IDIs are possible, although there is always the risk that visual components of signing will get lost in translation.
Video Relay Service (VRS) is a free service that can be explored as a potential platform for IDIs. The d/Deaf person on the video can sign to a live interpreter, who translates through the same video platform.
Text-based options are not recommended as a form of perfect communication because not all people who are d/Deaf can type in fluent English. At most, these conversations could be a combination of English and typed ASL, which could slow things down considerably. In this case, screening for similar signing capabilities would be required.
Decoding d/Deaf culture shows that a focus on multiculturalism encompasses more than just accounting for skin tone, ethnicity, and race. Who is “deaf” and who is “Deaf” might be continuously up for debate. However, the value of the debate is what matters and how as a community overall, we can better understand our differences.
Tools and Resources
- To learn sign, Bill Vicars has step-by-step YouTube videos and resources for beginners. www.youtube.com/billvicars
- ASL Meredith, www.aslmeredith.com
- Children of a Lesser God movie
- Hill, Joseph C. “Deaf Culture: Exploring Deaf Communities in the United States by Irene W. Leigh, Jean F. Andrews, and Raychelle L. Harris (review).” Sign Language Studies 1 (2017): 162-65. Web.