At 13, when her hearing loss made it increasingly difficult to decipher conversations, Jenny Witteborg tried to kill herself.
It was the isolation, she says, in struggling so mightily to communicate with her hearing family and friends as an angst-ridden teenager. Plus, she didn’t know anyone else who was Deaf back then, 50 years ago in San Diego, and figured anyone in her situation must have died young.
“I grew up having to read lips and speak, and I remember the night before first grade, my mother sat down with me and said, ‘Don’t tell them you can’t hear,’ ” recalls Witteborg, now 63, of Rixeyville, Virginia. “But if I don’t understand, what do I do?” she asked her mother. “Hearing people, they don’t understand everything,” her mother said.
“Really, I was taught to bluff the world growing up.”
Faking it, of course, hardly worked for Witteborg’s comprehension, let alone self-worth. For starters, only 30% of English speech is visible by mouth in the best of conditions, according to the National Deaf Center on Postsecondary Outcomes at the University of Texas at Austin. Witteborg’s suicide attempt landed her with a therapist whose mouth was shrouded in a long mustache and full beard that her mother pulled back from his lips so her daughter could read them. It was her first and last visit with a therapist until decades later.
Witteborg was well into her 50s and had long stopped hiding her identity when she met with Sharon Duchesneau, a North Bethesda-based Deaf therapist who signs. (Deaf with a capital D is often used by Deaf people to signify an identity and culture as opposed to a lowercase d, which denotes the audiological condition.) Their connection changed everything—providing the freedom of full expression and, just as critically, the common ground of a shared Deaf culture and language.
“To have counseling in my language, American Sign Language, and with a Deaf person who ‘gets it’—nothing can be comparable to that amazing space to begin to heal/advocate/live healthily with good boundaries,” Witteborg wrote in an email.
And yet, that basic element of therapy—to understand and be understood—eludes so many Deaf people due to the sheer lack of, and access to, licensed Deaf therapists, according to those in the field.
When Duchesneau, 54, and her work and life partner, Candace McCullough, 57, founded Deaf Counseling Center in May of 2001, they knew of no other Deaf-owned practice for Deaf clients. Even today, they say they can think of fewer than 10 Deaf therapists and not a single psychiatrist who signs in Greater Washington, D.C., home to one of the largest and most educated Deaf populations in the country, as well as Gallaudet University, the world’s only university geared toward Deaf and hard-of-hearing students.
Numbers are hard to come by and can be conflicting, but according to the 2011 U.S. Census’ Survey of Income and Program Participation, 1 million Americans are functionally Deaf, with more than half of them ages 65 and older; less than 4% are under the age of 18. The National Association of the Deaf puts that figure much higher, citing research from Johns Hopkins University in 2011 that found a fifth of Americans over the age of 12—or 48 million people—report hearing loss so severe it impedes communication. Hearing-loss prevalence roughly doubled with each decade of age. Referencing those statistics, the group’s CEO, Howard Rosenblum, figures at least 1.2 million of the D.C. metro area’s 6 million people are Deaf or hard of hearing. “Given that there’s a larger number of Deaf and hard-of-hearing people in D.C. compared to most other areas due to favorable employment conditions within the federal government as well as a thriving Deaf community, the percentage is probably higher, but no one has the exact data,” Rosenblum wrote in an email.
The National Institute on Deafness and Other Communication Disorders, a division of the National Institutes of Health, reports that two to three out of every 1,000 American children are born with hearing loss; and 90% of them are born to hearing parents.
The paucity of Deaf therapists owes largely to licensing issues. English exams present a hurdle for Deaf people, who often have delayed or incomplete access to the English language or use American Sign Language (ASL), which differs markedly in word order, syntax and grammar. Licensing also requires years of supervision, and finding employment with a supervisor who signs and understands Deaf culture is another potential barrier.
For example, the tight-knit Deaf community makes bumping into clients a given. “If we go to a social event or something, if our client’s there, it’s fine. We chat with them,” Duchesneau says through an ASL interpreter over herbal tea at Colada Shop in Potomac. “But many times, hearing supervisors will tell the Deaf therapists, ‘No. If you show up and your client’s there, you have to leave.’ ” Adds McCullough: “If you leave, then where is there a social life? …It’s not good for our social life.”
It’s not easy for Deaf people to avoid a conflict of interest when seeking a Deaf therapist. Judy Mounty, a Deaf licensed clinical social worker in Takoma Park, says that Kaiser Permanente referred her Deaf husband to her for therapy. Kaiser then followed up with the suggestion to see her co-worker who’s a friend of theirs.
To boost access for as many Deaf people as possible, McCullough and Duchesneau teamed up with licensed Deaf therapists across the country and offered counseling via videophone in 2003. That was two years after launching their business, and the concept met resistance from their colleagues, the couple says.
“They did something that was groundbreaking,” Mounty says. “Not only because the practice is exclusive to Deaf and hard-of-hearing people…they were doing virtual therapy before most other people were doing it,” she says. “They are a fixture in the Bethesda area.”
In addition to McCullough and Duchesneau, Deaf Counseling Center’s 15 to 25 therapists each see between 15 and 30 clients a week, but the firm can’t find enough licensed therapists to meet demand. “The need’s been there all along,” says McCullough, crediting social media for helping to reduce the stigma surrounding mental health so people feel more comfortable seeking therapy.
Since the pandemic, the couple has received more referrals than ever.
“People are looking for support increasingly now because of all of the factors associated with the pandemic,” Mounty says, noting the loss, isolation and shifts in family dynamics that have affected many people. And for the Deaf, there is always an added layer of feeling like they are outsiders, missing or misunderstanding conversations, Mounty explains.
Like the population at large, Deaf people represent a diverse range of identities and may seek therapy for as many concerns. Among the subgroups of the population, such as Black or gay Deaf people, not everyone feels they belong in the greater Deaf community, let alone American society. And not every Deaf person subscribes to a certain mode of communication, whether it’s signing, texting or lipreading, making it even more challenging to find the right fit in a therapist.
But in particular, Deaf people grapple with issues stemming from “audism,” the belief that hearing and speaking are superior to visual language, explain McCullough and Duchesneau. “The world would be a better place if doctors/hearing people were less enthusiastic about fixing Deaf People,” they wrote in an email. “There’s trauma from language deprivation during childhood, when access to ASL is denied. There’s trauma from oppression due to discrimination.”
Hearing loss puts people at significantly higher odds of low educational achievement and economic hardship, according to a 2014 Johns Hopkins study. In evaluating the 1999-2002 National Health and Nutrition Examination Survey (NHANES) of a cross section of Americans, researchers found that people with hearing loss were more than three times as likely as hearing people to have failed to graduate from high school and more than 1½ times as likely to earn less than $20,000 a year. Additionally, Deaf and hard-of-hearing children are at greater risk of neglect and abuse than hearing children. A 2010 survey of college students by the Rochester Institute of Technology found 77% of Deaf and hard-of-hearing respondents reported mistreatment, as opposed to 49% of hearing respondents.
Like any group that experiences discrimination, oppression gets internalized, Mounty says. “So Deaf people often have to deal with a buildup of stress and trauma. …Most people don’t have families who sign,” and, despite speaking or having access to assisted technology, still may not understand everything, she says. “ ‘Thanksgiving dinner table syndrome’ is a real thing for Deaf people from hearing families who don’t sign,” McCullough says. “They are left out of the fun conversations.”
So by the time Deaf people seek therapy, they tend to crave direct communication—and not have to unload their secrets through an interpreter.
And yet, McCullough says, she’s constantly having to make that case with insurance companies that will only pay for in-network therapy. That typically means a hearing therapist whose signing skills, if they have them, may be limited, and little chance of an interpreter. “With our Deaf community, many of them cannot afford to pay out of pocket,” she says, visibly frustrated.
“Can you imagine going to see a Mandarin or other foreign language-speaking therapist and an interpreter watching you?” McCullough asks. “And then you would have to explain American customs and different things?”
That’s why Jeanine, who didn’t want to be identified by her real name, sought McCullough’s help when she was navigating a painful divorce.
“A Deaf counselor wouldn’t need me to explain the cultural, family, language and societal issues around being Deaf before therapy could commence, and we could just dive in to the actual issues,” she wrote in an email.
She wouldn’t need to “code switch” or “sign in English word order” for someone who isn’t well versed in ASL, she says. “The mental load of doing that can get draining.” Even a hearing therapist who signs wouldn’t be a good fit for Jeanine. “They just don’t have the life experience to understand what I’m going through, and I didn’t want to deal with all that baggage and potential misunderstandings.”
Beyond the potential laboriousness of communicating with a hearing therapist, the culture clash can fuel distress.
Say a pregnant Deaf woman learns that her baby will be born Deaf, explains Duchesneau. That woman might rejoice in her ability to parent that child, but a hearing therapist might offer sympathy and recommend a cochlear implant—a device that helps Deaf people hear but is controversial in the Deaf community. Some even call the implant an attempt to “erase them,” says McCullough, who is a third-generation Deaf person.
McCullough decided to pursue a career in therapy in middle school during her parents’ separation. Although she attended a school for Deaf and hard-of-hearing children in Berkeley, California, the on-site psychologist’s sign language was lacking, so she confided in a Deaf teacher instead. That got her thinking about the need for a therapist steeped in Deaf culture. She’d dreamed of pursuing law, but this was before 1990, when the Americans with Disabilities Act of 1990 would have required an interpreter for her. So, McCullough says, she followed this dream instead.
For her part, Duchesneau grew up speaking and reading lips with her Deaf mother and grandmother in their small town in Maine. “I thought people who sign are lower functioning and goofy,” she says. “I grew up with my ‘smart’ hearing school. …We always looked down at the people who went to Deaf school,” she says before adding, “I’m not proud of that.”
Duchesneau got by on lipreading through college at the University of Virginia, where one of her professors was a CODA (child of a Deaf adult) who secured her an all-expense-paid six-week course in ASL at Gallaudet the summer after graduating. She reluctantly agreed—with the idea that learning sign language would help her to include Deaf people in her research on medical ethics at the National Institutes of Health in the fall. But her first day in ASL class was “life-changing,” Duchesneau says. “I realized what was missing all these years. I don’t have to struggle so hard for every conversation. …I was so used to missing things and having to fill in what people say.”
For Witteborg, her work with Duchesneau helped her to advocate for herself and request an interpreter while receiving medical care for Lyme disease. In lobbying the state on behalf of the Deaf community, therapy helped support her in the ordeal of fighting to be heard.
After Witteborg spent more than five years lobbying for a bill that tracks language development in Deaf and hard-of-hearing children to ensure readiness for kindergarten, Virginia Gov. Glenn Youngkin signed it into law in April.
Still, she says, such wins follow extensive effort—even trauma—to battle preconceived notions.
Despite the broader call toward equity and inclusion of all peoples, it can feel like the Deaf world is left out of that movement, say Witteborg and McCullough. In fighting for insurance coverage, McCullough says she feels like Deaf people are at the bottom of the totem pole, after every other disability.
At the same time, and further complicating understanding of the community, many Deaf people don’t consider themselves disabled.
As McCullough puts it: “It’s almost like Deaf people don’t quite fit in any neat package.”
Rachel Pomerance Berl is a freelance writer and editor who lives in Bethesda. She’s currently working on a collection of essays about motherhood.
This story appears in the July/August 2022 issue of Bethesda Magazine.