Results of the Interviews

Demographics

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The ages of the interview participants ranged from 19–71. Eight (80%) were White, one (10%) was African American, and one (10%) was Biracial. Seven (70%) of the participants were female, two (20%) were male, and one (10%) was trans male.

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Nine main themes that were similar across the cases were identified, which were around experiences in the family in childhood, social experiences in school, difficult or traumatic social experiences in childhood, sense of identity in adulthood, difficult or traumatic social experiences in adulthood, experiences with d/Deaf people versus hearing people, effects of difficult social interactions on quality of life in adulthood, self-care and making life easier, and positive communication strategies, strengths, and advocacy. 

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Experiences in the Family in Childhood

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The participants described both positive and negative experiences in childhood. A participant described positive experiences in her family:

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On my mom’s side with the distance family members I am very close to

them all, they invested their time to build relationship with me. They treat

me as a human, they use sign language but not fluency, they always

make time to hangout, communicate, and check on me. They also attend

to my special accomplishments and always being there. (Kate, 31-year-

old single White Deaf female)

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Another participant reported that his family was very supportive when he was growing up:

"My family was very supportive of me when I grew up and made sure that I had every opportunity to understand what was going on" (David, 23-year-old straight White Deaf male who is in a relationship). A participant talked about his brother who is one year younger than him, and how their mother: "would tell us stories about how if she didn't understand what I was trying to say, my brother would be able to "translate" for me. We used to be really close and had each other because we didn't have friends growing up" (Chris, 28-year-old single White demisexual transman who is deaf with a cochlear implant).

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However, another participant said that her family is supportive, but her experiences are sometimes difficult: "My extended family on both sides is also extremely accommodating and understanding, but I did (and do) sometimes feel lost in loud settings at family parties (Sarah, 21-year-old straight White single deaf female).

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The participants also reported experiencing microaggressions and other negative experiences in childhood. A participant described experiences of her family encouraging her to use spoken language rather than sign language:

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I am HoH and my family never learned sign language. I wasn’t formally

diagnosed with a congenital hearing impairment until I was in my 20s,

however since then my aunt and uncle have taken ASL classes with me. 

They felt terrible that they had been unintentionally excluding me for years.

(Jade, a 36-year-old White straight female with a hearing impairment who lives 

with her partner). 

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Also, a participant stated that: “The dinner table syndrome was in effect all the time, the only communication was one on one lipreading" (Alice, 71-year-old White divorced straight Deaf female).

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She went on to say:

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I felt I didn't want to be there. Sometimes I would bring a comic book to read  

while eating, and there would be a fight because I wouldn't give it up. Later I

began taking my plate to my bedroom to read and eat there.

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She added that: "nearly every time I talked to my parents, they would interrupt and correct my speech.” This is in example dinner table syndrome, where a deaf person is left out due to communication barriers (Hauser et al., 2008). Another participant's family called her “fool quiet person” as a child (Brianna, 26-year-old single straight African American and Latino female with a hearing impairment). She went on to say: “I have experienced other people thinking of me as fool quiet person throughout my life even myself have thought I was a fool quiet person.” This an example of the spread effect, where there is an assumption that a person's impairment has to do with a personality defect or a lack of intelligence (Goffman, 1963).

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Alice also talked about her experiences in childhood of getting criticized for how she communicated, and when she didn’t hear people, they ignored her and just talked to each other. She stated:

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Nearly every time I talked to my parents, they would interrupt and correct my 

speech. It was an isolated existence, only knowing one-on-one

communication, in which people (parents, sister, best friends, pullout 

teacher) addressed me directly.  No environmental, no group, no other

communication at all unless it was by writing and that was usually one on

one, too.

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People correcting Alice's speech is an example of psycho-emotional disablism, where a person does not take into consideration how their actions can be hurtful to a disabled person (Reeve, 2006).

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Social Experiences in School

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The participants reported both positive and negative school experiences:

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One participant said, “I think the best experience I had was having lots of friends. Some deaf and some non deaf. Teachers were really helpful and assisted me if I needed help" (Tina, 19-year-old single straight African American deaf female).

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Also, Brianna described her K-5th grade Deaf and Hard of Hearing Program:

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​It was a great positive space for me to grow and learn how to socialize. This

program was the best thing that ever happened to me during my childhood

 . . . My peers in the program, came from the same background as I was,

being the only person in the family with hearing difficulty.

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She also said: "We all got along great and was learning ASL."

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Similarly, Kate talked about the value of Deaf education, and the benefits of easy communication at a Deaf school: “the positive experience was a full access communication directly with staffs that uses ASL. It was the best thing also play on the sports with peers that I can have directly communication as well!”  This account shows the importance of inclusion and academic needs being met (Warick, 1994). However, the participants also talked about lack of opportunity to be around deaf peers. A participant stated, “I was unaware of Deaf culture until I was in middle school, and given a complete lack of emphasis on learning any American Sign Language, I felt intimidated and ill-equipped to attempt to try and integrate" (Michael, 32-year-old straight, White Deaf man who is married).

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Another participant described her experience in a mainstream school:

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I was alone in the mainstream . . . The negative experience was being

isolated, lonely, lack of communication, no ASL, and didn’t know about deaf

world. I had low-self-esteem and no confidence back then . . . I don’t have

friends in middle and high schools because no one want to be friend with me

because I’m deaf (Rita, 41-year-old straight White deaf female who lives with

her partner).

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Rita talked about the rejection she felt in high school when her teachers underestimated her and when her classmates did not want to be friends with her: "High school teachers didn't understand my deafness and treat me like disability which I don't like. I don't have friends in middle and high schools because no one want to be friend with me because I'm deaf." Rita's experience of rejection by her classmates shows how deaf children are often not accepted because it can be considered inconvenient to make an effort to interact with them (Ladd, et al., 1984).

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 Alice reported that while her teachers were supportive in elementary school,

 they did not understand her communication needs well, which was isolating:

    

Elementary school was mainstream, no interpreter, the only support was a

pullout three times a week to teach speech and to go over material from the

classroom. I was treated the same as every other pupil. Teachers were

generally positive, though the sixth-grade teacher had psychiatric problems

and abused me. On my own, I would go to the library and spend most of the

afternoon reading. 

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Jade talked about the bullying she experienced in school:

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The kids used to bully me for quite a few reasons, I even wore an eye patch

due to a lazy eye, but namely I was teased because I never seemed to quite

hear what was going on, they joked that I was stupid. I would sometimes

repeat what I thought I heard, and that was apparently hilarious to other

kids because I was always way off. They sometime in elementary school

they started joking about my need for a Miracle Ear, the over-the-counter

product being marketed at seniors in the 90s.

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Difficult or Traumatic Social Experiences in Childhood

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Alice also described having traumatic experiences in childhood:

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My parents believed in corporal punishment and beat me frequently, usually

for communication failure issues. Belt and paddle, sometimes a switch cut

from a tree. Enforced speech practice every day, pressure to wear a hearing

aid daily (profoundly deaf, not really eligible for hearing aids). Sibling fights

with follow-up parent beatings, with the expectation as an older child I was to

tolerate taunting from my younger sister and her neighborhood friends.

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Also, Rita talked about feeling lonely on the playground at recess, and not supported by the playground teacher. She said, "I remember one woman who was watching the recess, she told me you have to talk." She also said that the deaf oral teacher forced her to talk and do speech therapy everyday.

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This account of being mistreated by teachers shows how traumatic it can be to a disabled child when an adult is supposed to be looking after their welfare (Comedian, 2014).

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Sense of Identity in Adulthood

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The participants also described positive deaf identities, strengths, and involvement in activism and advocacy. Rita talked about how she became involved with Deaf culture and education: “Today, I’m a proud (Deaf university) alumni!” . . . “After I graduated, I go to the deaf/ASL social 1–2 per month. Going to ASL/deaf social events makes me feel like I belong to those world and no communication barrier. When I see people are signing make me happy.” Jade also described the strengths she has as a result of living with her hearing difficulties: "I think I am more mindful of speaking clearly, loudly, and slowly to public audiences, knowing there are people with similar challenges. I have learned to face people, speak to them in the same room, etc. just the way that I want to be treated."

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Also, David talked about what made him start identifying as Deaf:

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I started identifying myself as Deaf when I was in high school, maybe a

sophomore. I was going to Deaf camps, I was involved in Deaf clubs and I

became fluent in ASL. These experiences made me proud to be Deaf. I felt

much happier and I didn't feel like I had to hide my hearing loss to anyone

anymore. I no longer kept my hair long (to cover my devises) and I would tell

people I was Deaf.

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Sarah described being involved in disability activism. She talked about developing a positive disability identity through activism work:

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Disability has always been a part of who I am, but I didn’t become fully

familiar with it as an identity until I began college and enrolled in a disability

studies class. I’m now a disability studies minor and heavily involved in

disability work on campus (including serving as an undergraduate assistant

for an introductory disability studies course, acting as co-president of a

student disability advocacy organization I helped found and presenting        

on disability at conferences). Through this work, and the disabled friends  

and mentors I’ve met, I have discovered that there is a vibrant disability

community and culture, and have enjoyed participating in that.

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The participants' descriptions of their positive d/Deaf identities highlight that they value their ways of being, they do not feel ashamed of who they are, and they take pride in what they have experienced (Arnold & MacKenzie, 1998).

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Difficult or Traumatic Social Experiences in Adulthood

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The participants also described experiencing microaggressions as adults. Rita stated that: 

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Some hearing people can be rude, like never mind or yell or raise the

eyebrows facial express. It happened at my work (in a department store).

When a woman asked me and I said what? Then she got raise the eyebrows

facial talked back to me. She was rude. That made me upset even though I

had to let her go do her shopping.

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Rita also talked about people making negative assumptions about her: “I get discrimination or reject all time. Sometime, I feel they might afraid of me because they don’t know how to communicate to deaf person or they ignore deaf people because they think deaf don’t have language.” Also, Brianna stated that people make assumptions that she's quiet and shy:

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But I’m not a shy person, not at all. If I am being quiet it just means I don’t

know what’s going on . . . Or I can’t hear . . . There are situation where I have

felt dehumanized due to my lack of speech or skills that I have not yet excel.

These are the situations that drive me to continue to improve my speech,

improve skills, and keep growing.

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Tina talked about a recent situation where she had to push herself to explain what she needed and she got frustrated:

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I was at a fast food place one time, and I wanted a meal. Since I couldn’t   

speak I had to point out what I wanted, and they didn’t understand. It came  

to a point where had to slam my hand on the register, which I didn’t mean

to, but I was just so fed up at that point.

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She also talked about a difficult experience with her family:

           

A situation where it was not easy was when my family had a big party with  

many relatives who came over. I was the only one that night who didn’t get 

to talk much because most of my relatives didn’t know how to sign, and I 

didn’t have a good night. That night pretty much sucked.

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Similarly, Jade talked about her experiences with microaggressions when teaching college classes: 

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I would sometimes answer the wrong question, and have had students

snicker and make fun of me for it . . . I have found that even with repeated

reminders, people around me do not remember that I have hearing

challenges because I’m “passing” so well in society. They have no idea how          

difficult it actually is to function.

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The participants' descriptions reveal how deaf people often experience social exclusion and mistreatment (Nadew, 2012).

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Experiences with d/Deaf People Versus Hearing People in Adulthood

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The participants reported both positive and negative experiences with deaf and hearing people. Tina described communication being easier with deaf people: "With deaf it was easier, because we understood the condition we had." David described his interactions with hearing and Deaf people, and said, "My interactions with Deaf and hearing people are both extremely positive. I enjoy my friendships with both groups and I feel like I fit in well with both." He went on to say, "I feel happy no matter who I am talking too, but sometimes it is nice to talk to someone who has similar experiences to me."

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Three participants talked about feeling in-between hearing and deaf worlds. Michael talked about feeling he is not completely Deaf and not Hearing enough, and how it is good to connect with others with this experience:

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For most of my life, I struggled with feelings of not being "Hearing enough"

while also feeling like I was not "that deaf." The personal reality I've

discovered is that I am stuck in between - and that is a valid community in

itself.

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Similarly, Chris talked not fitting in the deaf or hearing world:

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I've always considered myself to be "between both worlds," simply because

I'm deaf but don't fit in the deaf community while I can hear but don't really fit

in the hearing community either. So social situations in both areas are

equally just as hard- ironically, I find myself having an easier time dealing

with hearing people more so than the deaf community.

     

These descriptions show the experience of liminality, where a deaf person feels in between deaf and hearing worlds (Goldin & Scheer, 1995).

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Sarah also expressed not completely fitting into hearing or Deaf worlds: "I feel I do not fit fully in either the hearing or Deaf worlds. I am left to navigate an awkward in-between space that has left me mostly without a true sense of kinship." However, she talked about an exception to this with her and her close friend, whom she attends college with and also has hearing loss:

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Because of our shared experiences – she is able to emphasize with me and

relate to me in ways no one else is . . . This is the type of social interaction I

wish I had more of: people who genuinely understand, or make a true effort

to understand, what it is to live with a hearing loss/deafness.

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Sarah's experience of feeling she belongs with her best friend who also has hearing loss is a positive example of one of the many ways of being deaf (Leigh, 2009).

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Effects of Difficult Social Interactions on Quality of Life in Adulthood

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The participants talked about the consequences of experiencing microaggressions:

Kate described feeling triggered in unwelcoming situations with hearing people: “I feel burning, anger, tears, hurt whenever I am being left out at events with Dad’s family. I feel invisible and nobody.” Also, Jade talked about how it makes her feel when people laugh: “the embarrassment is enough for me to (often) just pretend I heard what was said. I often just nod or laugh rather than asking people to repeat themselves a bunch” . . . “I no longer teach college classes because the students had a unique ability to humiliate me regarding my hearing difficulties.”

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Similarly, Rita described the impact of being treated unfairly:

 

I sometimes hesitate of feeling uncomfortable toward to hearing people

because of my voice and the way they think of my voice . . . I have fear of   

rejection . . .  When I have low self-esteem, struggle with career like what I

want to be, sometime in social, and sometime, feel like I'm failure.

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In addition, Michael talked about his parents wanting him to be as Hearing as possible and him feeling overwhelmed, and how this affected his relationships and communication throughout his life: “I spent a lifetime working to meet people where they stood, in terms of communication, regardless of the effort it required. It was simply the price of admission in that arena.”

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The participants described the impact of communication difficulties. Sarah talked about feeling like an outcast growing up because she was different. She also talked about feeling she had lack of experience because of difficult social situations: "As a result, I still don't feel I've developed the extent of social skills that some of my peers have, merely because of lack of experience (which in turn has led to self-esteem and confidence issues)." Chris also expressed a negative impact of social interactions on his life:

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It does impact my decisions in my everyday life, consciously and

subconsciously. It affects the way I agree to social events, it affects the

way I have to use the phone or walkie-talkie or even webcamming with

people, it affects the way I determine if it's worth my time and energy to  

even talk to others. 

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Brianna also talked about how her experiences with communication difficulties have led her to shut down at times: “I would feel awkward and I immediately shut down let myself be embarrassed” . . . “It was difficult to trust due to fear of being mistreated or disrespect.” Her description of shutting down shows the effects of deaf people's lack of trust and fear of being treated poorly (Vernon & Miller, 2002). However, she described positive ways she handles difficult social situations:

 

When it comes to stressful situations, I do what I have to do to get through it.

If it is something I cannot handle, I either ask for help or let it be. Most of all,

pray for strength to get past it. I managed to be able to overcome most of

the stressful situations in my life. And It would not be possible without Jesus

Christ.

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Self-care and Making Life Easier

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The participants also talked about the importance of self-care. Brianna said that she is able to manage her social situations by telling herself that it is okay to not hear everything when she is in a situation where it is difficult to hear: “I tell myself to not stress and try to enjoy myself, because most of the times, it does not mean anything if I am not meant to hear or know what are being said.”

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Also, Kate talked about a self-care strategy of being able to decline social events where she has difficulty. She said: "As I get older I was able to decline my Dad’s family events. I kept it once a year visit only also short ones.” Similarly, Michael stated, “I would opt to decline invitations to large group events or to venues that I know I would wind up working much harder to participate in than I would like.” He also said that participation in social events is positive when: “both my friends and I are left comfortable with negotiating the social situations and the expectations therein.” These self-care practices show the importance of deaf people doing things in ways that work for them (Leigh, 2009).

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Positive Communication Strategies, Strengths, and Advocacy

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The participants also described positive communication strategies they use and for others to use, in social interactions. Kate talked about educating hearing people she works with. She said, "I would throw some funny jokes" . . . "I love to educate." Alice described some of her strategies as: “Reading beforehand, picking the people who would be most helpful, writing, or focus entirely on accessible or Deaf community events.” Sarah said that what is helpful to her is others “arranging for quieter environments, speaking loudly, and being willing to repeat oneself, making an effort to understand me is most helpful” and “also understanding why and how my hearing loss/deafness make me who I am.” Chris stated the importance of having an open mind: “PATIENCE" . . . “all it takes is an open mind and willingness to understand and adapt to the situation, then everyone would be better off.”

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Jade talked about the strategies she uses to help her communicate when it is difficult to hear in social situations:

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I face the speaker, sit nearer the speaker, I lip read, and I ask folks to repeat

themselves. I often have to loudly declare that I am HEARING IMPAIRED,       

and then they get it. When I used to say Hard of Hearing, people would kind of laugh and say “yeah, I’m kinda deaf too in this ear.”  I always had to correct them and say, “No, I have an actual, diagnosed hearing impairment.”

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Michael said that he finds it helpful to communicate his needs and expectations to people. He talked about how it is not up to other people to know what he needs:

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It is NOT intuitive for anyone, even others with a hearing loss, to just know

what expectations (or concerns) I may have about an event. For one, I do not

want to make my friends feel like they need to read my mind. It is also

important to me that my friends understand that my ability to participate in

events varies based on lots of factors, some of which are situational, like

what time of day it is, how much rest I had the night before, etc.

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