The Complexity of the CODA Experience

Having grown up as a child of deaf adults (CODA), Julia Pichler, Ed.M.’22, had questions about her own experiences and the development of her identity. What did it mean, for example, that being a CODA became such a large part of how she moved through the world? But, in examining the research on CODA, she found that it often lacked an acknowledgement of the richness of these experiences, focusing instead on the idea that speaking children growing up with deaf parents had an “atypical” identity or “problematic” developmental trajectories. 

At HGSE, Pichler connected with Lecturer Hadas Eidelman, whose research has focused on special education policy and developmental process, at an Education Policy and Analysis advising event where they discussed disability experience. Both felt passionately about finding a way to expand the conversation around disability to be more celebratory and inclusive of the richness of individual experiences. Working together in the second half of Pichler’s final semester, they created a survey that attempted to capture the nuance and textures of CODA experiences and identities. What surprised them both was how willing the CODA community was to participate. 

“Ideas about breaking down misconceptions came through really strongly in responses,” says Pichler. “People are really proud of being CODA. And I don’t think the [existing] research has sufficiently captured that.” 

To date, they’ve collected more than 155 responses and will continue their analysis of the qualitative and quantitative data, eventually consolidating their findings in an online resource.   

Last spring, Pichler and Eidelman shared their early findings with the HGSE community alongside a screening of the Academy Award-winning movie CODA to spark conversation about different kinds of families and the complexity of the CODA experience. Here, they discuss their study and share a bit about their findings.

How does your study begin to present a different narrative about the CODA experience?

Julia Pichler: A lot of the existing research focuses on language development. One of the most-researched questions is “How do CODA learn to speak if their parents sign?” Also a lot of the work was about language delays or disfunction, but not much research about identity and belonging. So, past research focused on what is atypical without always applying an asset-based lens. We wanted to change that. We focused our research on identity, sense of belonging, and the navigation between the two cultures of the hearing world and the deaf world.

Hadas Eidelman: This isn’t just the case for CODA research, it’s the case for a lot of research around any issues involving disability. A lot of it comes from a stance based in a medical model that carries assumptions about what “typical” or “healthy” development looks like, and then contrasts whatever the disability-identity portion is with that perceived “normal” development. 

In wanting to capture a range of diverse experiences, how’d you go about developing the survey?

Eidelman: We went through multiple iterations, questioning what biases might be in each question, what assumptions we might be making. We tried to develop questions that were as inclusive as possible to different experiences. Because when you’re doing a survey and you’ve asked a question that makes it clear that the asker is not aware of your experience, that’s an excluding, othering experience. I’ll just say that having worked on different studies and surveys, the completion rate on this one is so high! Part of this high response is the topic of course. It’s refreshing to have questions that address one’s lived experience when it’s often ignored in the culture at large. There was one open-ended question, which was totally optional, about translation experiences in childhood, and we got close to a 95% response rate.

Pichler: And this is only the start! The survey was in English and German, and it was distributed through various channels like Facebook groups and through my personal network as a CODA. We had closed questions and open-ended questions to help bring in more of the narrative as well. We’ve only examined those qualitative responses briefly and we’re planning on following up with some of the participants for interviews in the future, as respondents had the opportunity to share their emails anonymously. The responses are still growing every day. We have 155 responses, mainly from the U.S. but also from all over the world — we have responses from the U.S., Germany, Austria, Australia, Canada, Serbia, Switzerland, the U.K. While it is international, these are all developed countries so that is a limitation we think about as well. 

Tell me a little bit about what you’ve started to uncover.

Pichler: One major finding was around translation. What was interesting to see was that no matter the sign language proficiency, the number of respondents that said they had translated is incredibly high — almost everyone did that. While my mom said she didn’t want me to translate as a child because she’d heard somewhere that it wasn’t good for my development, it was still such a big part of my childhood. Translation isn’t something caregivers can always influence because other people would ask me to translate. For example, one respondent in the survey mentioned that the police tried to force them to translate for their caregiver at a traffic stop. So even if the parents don’t want that for their child, it’s often unavoidable. 

You presented these findings alongside a screening of this year’s Best Picture Oscar winner, CODA, and a big point of conflict for the main character in that movie is feeling like she’s responsible for her parents. How did your findings relate to the film

Pichler: The movie shows one experience, and that’s beautiful, but there are so many more stories out there. I’m mindful that because it’s the only story people might know they might assume a deaf father or mother is always like the one portrayed in the film. Sharing different stories of the CODA experience is important. So, we were curious about parentification [where children feel responsible for caring for their parents, as shown in the movie], but it didn’t mean we were assuming that CODA were more parentified than any other group. We modified an established parentification scale and asked questions like, “do you feel you’re the only person your parents can go to for help?” From our results, we can see that there’s a range from almost none to extremely, keeping in mind we can’t draw a comparison to the whole population. Nevertheless, across the range of parentification experiences, people said they liked being CODA and are proud of being a CODA and that’s exciting and beautiful to read.

Additionally, we spent a lot of time thinking about how we could ask about family structure in a way that would be inclusive of lived experiences. We found that more than a third of the participants listed more than two primary caregivers and at least 75% had two deaf caregivers.

Eidelman: We really weren’t trying to play into ideas about what’s good or appropriate for kids [like parentification] — it was more about [sharing] how people go through the world. And we surfaced some really deep, mixed feelings and there’s a real pride too. This isn’t studying somebody, but really asking about their experience and letting that lead the storytelling. We’ve barely even scratched the surface of qualitative responses but having read them without a lot of analysis , we’ve got stories from people in their sixties and seventies as well as their twenties and there are differences because the world was so different in those generations.

And you also surfaced that there could be a lot of variation among CODA in the same family.

Pichler: This was interesting to me because my sister, who is younger, had a completely different CODA experience growing up than I did. And that was interesting that even if you have the same parents or caregivers, your experience can be completely different. Sign and spoken language are such a big part of my identity while my sister identifies more strongly with spoken language as her first language. 

We also asked about identification with deaf culture. It’s a strength in the community that there’s such a powerful identification with that culture. It was a convenience sample [and not fully representative of the population] so it might look different between other CODA. We asked our sample about their experience with cultural brokering and identity. Ninety-five percent of respondents explained deaf culture to hearing people and 72% explained “the hearing way” to Deaf people. The first experience was more emotionally charged while, overall, both were more positively charged than negatively charged. This relates to the pride of being a CODA.

What has sharing this research brought up for you?

Eidelman: There’s this beautiful diversity of ways people exist in the world and, for a variety of historical reasons, we’ve ended up in a situation where there’s this false dichotomy of “disabled” and “abled” — it’s not only that it’s not true, but it does a disservice to the celebration of the individuality. This was a way to continue that conversation about diversity. There’s an idea out there that having a different way of taking the world in than the majority is somehow a tragedy — and that doesn’t have to be there.

Pichler: My mom arrived a week before graduation and met my friends and, partly because of the event, but also because of other connections, a lot of them went up to my mom and signed their names. She thinks it’s incredible. Having shared these findings, people are taking it out into the world and engaging in conversations with their others about sign language. There’s power in sharing this and making others aware of the range of experiences so we can be more thoughtful as a society.